Liptak GS, Garver K, Dosa NP. (2013) Spina bifida grown up. Journal of Developmental and Behavioral Pediatrics. 2013 Apr;34(3):206-15.
The majority of people with spina bifida
in the United States are now older than 18 years of age. Health care
delivery for adults with this condition should include routine
surveillance for common conditions such as hypertension, hyperlipidemia
and cancer. It should also address spina bifida-related
complications such as pressure sores, lymphedema, sexual dysfunction
and infertility, and hydrocephalus, as well as chiari-related symptoms
such as sleep apnea and urologic and renal functioning. Almost all adults with spina bifida benefit from regular followup with specialists in urology, neurosurgery and physiatry. Health care providers for adults with spina bifida
should recognize the impact of executive dysfunction and nonverbal
learning disability on self management, independent living, and
employment in adults with spina bifida.
doi: 10.1097/DBP.0b013e31828c5f88.
Showing posts with label Adult Care. Show all posts
Showing posts with label Adult Care. Show all posts
Thursday, December 26, 2013
Monday, January 9, 2012
Urological follow-up of adult spina bifida patients
Ahmad I, Granitsiotis P. (2007) Urological follow-up of adult spina bifida patients. Neurourol Urodyn. 2007;26(7):978-80. Review.
Department of Urology, Southern General Hospital, Glasgow, Scotland, United Kingdom. imranahmad@doctors.net.uk
AIMS:
The vast majority of the current urological literature understandably has concentrated on the management of children with spina bifida, because in the past the majority did not survive into adulthood. With improvements in the understanding and multidisciplinary care of spina bifida patients it has become a disease of adults. Our aim was to evaluate the current literature to attempt to formulate evidence based guidelines for the management of this difficult group of patients.
METHODS:
We reviewed the literature on adult urological management of spina bifida, all relevant articles which concentrated on adults and long-term management were studied in full.
RESULTS:
Renal function may begin/continue to deteriorate into adulthood, becoming the leading cause of adult death. This is thought to occur because of changes in the adult bladder, with increases in storage pressure. Medical and surgical management should aim to preserve renal function as well as the maintenance of continence in the face of the growing and changing urinary tract. Follow-up should be regular and in the context of a specialist multidisciplinary clinic. Despite being unvalidated in the follow-up of adult spina bifida patient's annual serum creatinine, ultrasound and urodynamics are currently the best tools available.
CONCLUSIONS:
There is no reason why the majority of spina bifida sufferers cannot use their own kidneys for the rest of their lives. This however relies on urological treatment being instigated soon after birth and continuing into adulthood.
PMID: 17626275
Department of Urology, Southern General Hospital, Glasgow, Scotland, United Kingdom. imranahmad@doctors.net.uk
AIMS:
The vast majority of the current urological literature understandably has concentrated on the management of children with spina bifida, because in the past the majority did not survive into adulthood. With improvements in the understanding and multidisciplinary care of spina bifida patients it has become a disease of adults. Our aim was to evaluate the current literature to attempt to formulate evidence based guidelines for the management of this difficult group of patients.
METHODS:
We reviewed the literature on adult urological management of spina bifida, all relevant articles which concentrated on adults and long-term management were studied in full.
RESULTS:
Renal function may begin/continue to deteriorate into adulthood, becoming the leading cause of adult death. This is thought to occur because of changes in the adult bladder, with increases in storage pressure. Medical and surgical management should aim to preserve renal function as well as the maintenance of continence in the face of the growing and changing urinary tract. Follow-up should be regular and in the context of a specialist multidisciplinary clinic. Despite being unvalidated in the follow-up of adult spina bifida patient's annual serum creatinine, ultrasound and urodynamics are currently the best tools available.
CONCLUSIONS:
There is no reason why the majority of spina bifida sufferers cannot use their own kidneys for the rest of their lives. This however relies on urological treatment being instigated soon after birth and continuing into adulthood.
PMID: 17626275
Saturday, October 6, 2007
The transition study: a look at youth and adults with cerebral palsy, spina bifida and acquired brain injury
Young N, McCormick A, Mills W, Barden W, Boydell K, Law M, Wedge J, Fehlings D, Mukherjee S, Rumney P, Williams JI. The transition study: a look at youth and adults with cerebral palsy, spina bifida and acquired brain injury.
Physical and Occupational Therapy in Pediatrics. 2006;26(4):25-45.
A group of 100 adults and 190 youth who have cerebral palsy (CP), spina bifida (SB), and acquired brain injuries from childhood (ABIc) participated in a multi-method study focused on the transition to adult health care. The results show that 95% of youth and 61% of adults were living with their parents; 23% of the youth and 55% of adults were employed; and 60% of youth and 42% of adults reported "excellent" or "very good" health. The lowest health scores were reported by adults with SB. These findings provide a starting point for examining health issues specific to youth and young adults with CP, SB, and ABIc.
PMID: 17135068
Physical and Occupational Therapy in Pediatrics. 2006;26(4):25-45.
A group of 100 adults and 190 youth who have cerebral palsy (CP), spina bifida (SB), and acquired brain injuries from childhood (ABIc) participated in a multi-method study focused on the transition to adult health care. The results show that 95% of youth and 61% of adults were living with their parents; 23% of the youth and 55% of adults were employed; and 60% of youth and 42% of adults reported "excellent" or "very good" health. The lowest health scores were reported by adults with SB. These findings provide a starting point for examining health issues specific to youth and young adults with CP, SB, and ABIc.
PMID: 17135068
The transition from child to adult in neurosurgery
Vinchon M, Dhellemmes P. The transition from child to adult in neurosurgery.
Advances and Technical Standards in Neurosurgery. 2007;32:3-24.
The transition from child to adult is a growing concern in neurosurgery. Data documenting long-term follow-up are necessary to define this population's healthcare needs. In order to evaluate the problems posed by the child-to-adult transition in neurosurgery, we have studied the neurological, functional and social outcome of patients treated in our department for tumor of the central nervous system, hydrocephalus or myelomeningocele, and followed beyond the age of eighteen years. A large number of patients suffered from chronic ailments, either sequelae of their initial disease, or delayed complications of their initial treatment, with significant morbidity. The mortality during adulthood was 4.6% in the tumor group, 1.1% in the hydrocephalus group, and zero in the spina bifida group. The proportion of patients employed in normal jobs was 35.6, 18.7 and 11.5% for tumors, hydrocephalus and myelomeningocele respectively. IQ score and performance at school generally overestimated the capacity for social integration. Based on these data and on the available literature, we tried to identify the problems and devise solutions for the management of the transition from child-to-adulthood transition. Many problems present during childhood persist to adulthood, some of which are made more acute because of a more competitive environment, the lack of structures and inadequate medical follow-up. The transition from child to adult must be managed jointly by pediatric and adult neurosurgeons. More clinical research is required in order to precisely evaluate the problems posed by adult patients treated during childhood for the different neurosurgical diseases. Based on these data, a concerted trans-disciplinary approach is necessary, tailored to the specific needs of patients suffering from different diseases.
PMID: 17907472
Advances and Technical Standards in Neurosurgery. 2007;32:3-24.
The transition from child to adult is a growing concern in neurosurgery. Data documenting long-term follow-up are necessary to define this population's healthcare needs. In order to evaluate the problems posed by the child-to-adult transition in neurosurgery, we have studied the neurological, functional and social outcome of patients treated in our department for tumor of the central nervous system, hydrocephalus or myelomeningocele, and followed beyond the age of eighteen years. A large number of patients suffered from chronic ailments, either sequelae of their initial disease, or delayed complications of their initial treatment, with significant morbidity. The mortality during adulthood was 4.6% in the tumor group, 1.1% in the hydrocephalus group, and zero in the spina bifida group. The proportion of patients employed in normal jobs was 35.6, 18.7 and 11.5% for tumors, hydrocephalus and myelomeningocele respectively. IQ score and performance at school generally overestimated the capacity for social integration. Based on these data and on the available literature, we tried to identify the problems and devise solutions for the management of the transition from child-to-adulthood transition. Many problems present during childhood persist to adulthood, some of which are made more acute because of a more competitive environment, the lack of structures and inadequate medical follow-up. The transition from child to adult must be managed jointly by pediatric and adult neurosurgeons. More clinical research is required in order to precisely evaluate the problems posed by adult patients treated during childhood for the different neurosurgical diseases. Based on these data, a concerted trans-disciplinary approach is necessary, tailored to the specific needs of patients suffering from different diseases.
PMID: 17907472
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