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 Transition. Show all posts
Showing posts with label Transition. Show all posts
Thursday, December 26, 2013
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
Tuesday, August 7, 2007
What do we really know about the transition to adult-centered health care?
Binks JA, Barden WS, Burke TA, Young NL. What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida. Archives of Physical Medicine & Rehabilitation 2007 Aug;88(8):1064-73.
OBJECTIVES: To address the lack of synthesis regarding the factors, processes, and outcomes specific to the transition from child-centered to adult-centered health care for people with cerebral palsy (CP) and spina bifida (SB); more specifically, to identify barriers, to outline key elements, to review empirical studies, and to make clinical and research recommendations.
DATA SOURCES: We searched Medline and CINAHL databases from 1990 to 2006 using the key words: transition, health care transition, pediatric health care, adult health care, health care access, health care use, chronic illness, special health care needs, and physical disability. The resulting studies were reviewed with a specific focus on clinical transition for persons with CP and SB, and were supplemented with key information from other diagnostic groups.
STUDY SELECTION: All studies meeting the inclusion criteria were included.
DATA EXTRACTION: Each article classified according to 5 criteria: methodology, diagnostic group, country of study, age group, and sample size.
DATA SYNTHESIS: We identified 149 articles: 54 discussion, 21 case series, 28 database or register, 25 qualitative, and 34 survey articles (some included multiple methods). We identified 5 key elements that support a positive transition to adult-centered health care: preparation, flexible timing, care coordination, transition clinic visits, and interested adult-centered health care providers. There was, however, limited empirical evidence to support the impact of these elements.
CONCLUSIONS: This review summarizes key factors that must be considered to support this critical clinical transition and sets the foundation for future research. It is time to apply prospective study designs to evaluate transition interventions and determine long-term health outcomes.
PMID: 17678671
OBJECTIVES: To address the lack of synthesis regarding the factors, processes, and outcomes specific to the transition from child-centered to adult-centered health care for people with cerebral palsy (CP) and spina bifida (SB); more specifically, to identify barriers, to outline key elements, to review empirical studies, and to make clinical and research recommendations.
DATA SOURCES: We searched Medline and CINAHL databases from 1990 to 2006 using the key words: transition, health care transition, pediatric health care, adult health care, health care access, health care use, chronic illness, special health care needs, and physical disability. The resulting studies were reviewed with a specific focus on clinical transition for persons with CP and SB, and were supplemented with key information from other diagnostic groups.
STUDY SELECTION: All studies meeting the inclusion criteria were included.
DATA EXTRACTION: Each article classified according to 5 criteria: methodology, diagnostic group, country of study, age group, and sample size.
DATA SYNTHESIS: We identified 149 articles: 54 discussion, 21 case series, 28 database or register, 25 qualitative, and 34 survey articles (some included multiple methods). We identified 5 key elements that support a positive transition to adult-centered health care: preparation, flexible timing, care coordination, transition clinic visits, and interested adult-centered health care providers. There was, however, limited empirical evidence to support the impact of these elements.
CONCLUSIONS: This review summarizes key factors that must be considered to support this critical clinical transition and sets the foundation for future research. It is time to apply prospective study designs to evaluate transition interventions and determine long-term health outcomes.
PMID: 17678671
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