Oakeshott P, Hunt GM, Poulton A, Reid F. (2010) Expectation of life and unexpected death in open spina bifida: a 40-year complete, non-selective, longitudinal cohort study Dev Med Child Neurol. 2010 Aug;52(8):749-53.
AIM:
The aim of our study was to investigate survival and causes of death in a complete cohort of open spina bifida at the mean age of 40 years.
METHOD:
We conducted a community-based, prospective study of 117 consecutive infants (50 males, 67 females) with open spina bifida whose backs were closed non-selectively within 48 hours of birth between 1963 and 1971 at Addenbrooke's Hospital, Cambridge, UK. Of those who survived to age 1 year, 89% (82 out of 92) had a cerebrospinal fluid shunt. In 2007, all survivors were surveyed by postal questionnaire backed up by telephone interview. Details of deaths were obtained from the Office for National Statistics, medical records, and autopsy reports, and Kaplan-Meier survival curves were constructed.
RESULTS:
One in three of the cohort (40/117) died before the age of 5 years. A further 26% (31/117) died during the next 35 years, over 10 times the national average. Half the deaths (16/31) after the age of 5 were sudden and unexpected. All occurred in the community and were followed by a coroner's autopsy. The most frequent causes of these unexpected deaths were epilepsy, pulmonary embolus, acute hydrocephalus, and acute renal sepsis. The prognosis for survival was strikingly poor in those with the most extensive neurological deficit. Only 17% (7/42) of those born with a high sensory level (above T11) survived to the mean age of 40 years, compared with 61% (23/38) of those with a low sensory level (below L3; p=0.001).
INTERPRETATION:
Doctors and care planners need to be aware that, contrary to previous suggestions, there is continuing high mortality throughout adult life in individuals with open spina bifida, and many deaths are unexpected.
Showing posts with label Mortality. Show all posts
Showing posts with label Mortality. Show all posts
Monday, January 9, 2012
Monday, March 17, 2008
Complications with shunts in adults with spina bifida
Tomlinson P, Sugarman ID. Complications with shunts in adults with spina bifida. British Medical Journal 1995 Jul 29;311(7000):286-7.
OBJECTIVE--To assess the incidence of malfunction of shunts in adults with spina bifida who have shunts to control hydrocephalus.
DESIGN--A retrospective review of the medical notes and contact by questionnaire of adults with spina bifida to assess symptoms, function of shunts, frequency of operative procedures, and follow-up.
SUBJECTS--110 patients with shunts who attended Lord Mayor Treloar College for the physically disabled between 1978 and 1993.
RESULTS--The average (range) number of revisions of shunts per person was 3.6 (0-28). Although 37 patients underwent an emergency operation for revision in their first year of life, there was a continuing low incidence, increasing in the early teenage years, which persisted into the third decade. Intervals between emergency revisions varied: 202/320 occurred within one year of the last shunt operation, 56 occurred after five years, 24 after 10 years, and 15 after 15 or more years. Fifteen patients had chronic intermittent headaches, of whom four died and three suffered severe morbidity. Thirteen died; three had raised intracranial pressure, and four died suddenly; these deaths were presumed to be related to their shunts. Up to the age of 16 there was 100% hospital follow up, but after that only 40% of young adults underwent review, including review of their shunt function.
CONCLUSION--Shunts to control hydrocephalus may fail after many years without symptoms. This is difficult to diagnose and if missed may lead to chronic morbidity and death. As hospital follow up of this group is falling, both general practitioners and hospital doctors must be aware that a shunt may malfunction after prolonged quiescent periods.
PMID: 7633231
OBJECTIVE--To assess the incidence of malfunction of shunts in adults with spina bifida who have shunts to control hydrocephalus.
DESIGN--A retrospective review of the medical notes and contact by questionnaire of adults with spina bifida to assess symptoms, function of shunts, frequency of operative procedures, and follow-up.
SUBJECTS--110 patients with shunts who attended Lord Mayor Treloar College for the physically disabled between 1978 and 1993.
RESULTS--The average (range) number of revisions of shunts per person was 3.6 (0-28). Although 37 patients underwent an emergency operation for revision in their first year of life, there was a continuing low incidence, increasing in the early teenage years, which persisted into the third decade. Intervals between emergency revisions varied: 202/320 occurred within one year of the last shunt operation, 56 occurred after five years, 24 after 10 years, and 15 after 15 or more years. Fifteen patients had chronic intermittent headaches, of whom four died and three suffered severe morbidity. Thirteen died; three had raised intracranial pressure, and four died suddenly; these deaths were presumed to be related to their shunts. Up to the age of 16 there was 100% hospital follow up, but after that only 40% of young adults underwent review, including review of their shunt function.
CONCLUSION--Shunts to control hydrocephalus may fail after many years without symptoms. This is difficult to diagnose and if missed may lead to chronic morbidity and death. As hospital follow up of this group is falling, both general practitioners and hospital doctors must be aware that a shunt may malfunction after prolonged quiescent periods.
PMID: 7633231
Why do adults with spina bifida and hydrocephalus die?
McDonnell GV, McCann JP. Why do adults with spina bifida and hydrocephalus die? A clinic-based study. European Journal of Pediatric Surgery. 2000 Dec;10 Suppl 1:31-2.
AIM: To establish the death rate and factors contributing to death among attenders at a clinic for adults with spina bifida and hydrocephalus (CASBAH).
INTRODUCTION: Due to improvements in medical care in the past 40 years, increasing numbers of spina bifida patients go on to prosper in adult life. Despite this, levels of morbidity are high and services for such patients are uneven and unpredictable.
MATERIALS AND METHODS: Since 1990 there has been a CASBAH service in Belfast operating on a regional basis. Led by a consultant in rehabilitation medicine, it provides a multidisciplinary approach to patient care. Between 1990 and 1999 there have been 280 referrals to the clinic. Charts were reviewed regarding current health status and mode of death where relevant.
RESULTS: There have been 18 deaths during the term of the clinic (6.4%). There were four deaths due to renal failure and two due to cardiac failure. Two deaths occurred following surgery for a Chiari/hydrosyringomyelia complex and one patient died due to shunt malfunction. Three deaths were presumed related to infection. Two deaths were attributable to malignancy (carcinoma of a renal conduit and transitional cell carcinoma of the kidney) and other terminal events in one patient each were: basilar artery aneurysm rupture, post-partum pulmonary embolism, peptic ulcer disease, myocardial infarction and status epilepticus.
CONCLUSIONS: Although certain deaths were unpredictable during the period of review and not directly attributable to spina bifida, the majority reflect many of the related secondary health issues of the condition and indicate the need for organised, medically co-ordinated follow-up of adult patients.
PMID: 11214829
AIM: To establish the death rate and factors contributing to death among attenders at a clinic for adults with spina bifida and hydrocephalus (CASBAH).
INTRODUCTION: Due to improvements in medical care in the past 40 years, increasing numbers of spina bifida patients go on to prosper in adult life. Despite this, levels of morbidity are high and services for such patients are uneven and unpredictable.
MATERIALS AND METHODS: Since 1990 there has been a CASBAH service in Belfast operating on a regional basis. Led by a consultant in rehabilitation medicine, it provides a multidisciplinary approach to patient care. Between 1990 and 1999 there have been 280 referrals to the clinic. Charts were reviewed regarding current health status and mode of death where relevant.
RESULTS: There have been 18 deaths during the term of the clinic (6.4%). There were four deaths due to renal failure and two due to cardiac failure. Two deaths occurred following surgery for a Chiari/hydrosyringomyelia complex and one patient died due to shunt malfunction. Three deaths were presumed related to infection. Two deaths were attributable to malignancy (carcinoma of a renal conduit and transitional cell carcinoma of the kidney) and other terminal events in one patient each were: basilar artery aneurysm rupture, post-partum pulmonary embolism, peptic ulcer disease, myocardial infarction and status epilepticus.
CONCLUSIONS: Although certain deaths were unpredictable during the period of review and not directly attributable to spina bifida, the majority reflect many of the related secondary health issues of the condition and indicate the need for organised, medically co-ordinated follow-up of adult patients.
PMID: 11214829
Monday, October 29, 2007
Do grip and pinch strength predict neurologic complications in children with spina bifida and hydrocephalus
Liptak GS, Fried R, Baltus-Hebert E, Eyer Tierney S, Fucile S, Doremus TL. Do grip and pinch strength predict neurologic complications in children with spina bifida and hydrocephalus? Pediatric Neurosurgery. 2006;42(4):208-13.
BACKGROUND: Neurological complications occur commonly in children with meningomyelocele and can cause significant morbidity and mortality. An earlier study suggested that acute changes in grip and pinch strength could be used to identify individuals at increased risk for developing a neurological complication.
OBJECTIVE: To evaluate the use of grip and pinch measurements to screen for neurological problems in children with spina bifida and hydrocephalus.
DESIGN: A prospective evaluation of screening tests.
PATIENTS: 92 children, born since 1976, who had meningomyelocele and hydrocephalus and were treated at the University of Rochester Medical Center.
METHODS: Grip and pinch strength were measured between July, 1991, and June, 2003. RESULTS: Mean grip and pinch strengths were similar to those found in previous studies of children with meningomyelocele; 58 neurological events occurred in 39 (40%) individuals. These included 31 episodes of ventricular shunt failure and 22 symptomatic tethered cord occurrences. Specificity, sensitivity and likelihood ratios were calculated in multiple ways using different criteria for loss of grip or pinch strength and for interval to neurological event. Sensitivities were low (<0.35) and the highest positive likelihood ratio found, using fall in either lateral pinch with 6 months to neurological event, was 2.3.
CONCLUSIONS: Despite previous recommendations, grip and pinch measurements were not helpful when used as a routine screening test for neurological dysfunction for children with meningomyelocele and hydrocephalus.
PMID: 16714860
BACKGROUND: Neurological complications occur commonly in children with meningomyelocele and can cause significant morbidity and mortality. An earlier study suggested that acute changes in grip and pinch strength could be used to identify individuals at increased risk for developing a neurological complication.
OBJECTIVE: To evaluate the use of grip and pinch measurements to screen for neurological problems in children with spina bifida and hydrocephalus.
DESIGN: A prospective evaluation of screening tests.
PATIENTS: 92 children, born since 1976, who had meningomyelocele and hydrocephalus and were treated at the University of Rochester Medical Center.
METHODS: Grip and pinch strength were measured between July, 1991, and June, 2003. RESULTS: Mean grip and pinch strengths were similar to those found in previous studies of children with meningomyelocele; 58 neurological events occurred in 39 (40%) individuals. These included 31 episodes of ventricular shunt failure and 22 symptomatic tethered cord occurrences. Specificity, sensitivity and likelihood ratios were calculated in multiple ways using different criteria for loss of grip or pinch strength and for interval to neurological event. Sensitivities were low (<0.35) and the highest positive likelihood ratio found, using fall in either lateral pinch with 6 months to neurological event, was 2.3.
CONCLUSIONS: Despite previous recommendations, grip and pinch measurements were not helpful when used as a routine screening test for neurological dysfunction for children with meningomyelocele and hydrocephalus.
PMID: 16714860
Spina bifida outcome: a 25-year prospective
Bowman RM, McLone DG, Grant JA, Tomita T, Ito JA. Spina bifida outcome: a 25-year prospective. Pediatric Neurosurgery. 2001 Mar;34(3):114-20.
BACKGROUND: Open spina bifida is the most complex congenital abnormality compatible with long-term survival. This report outlines the 20- to 25-year outcome for our original cohort of patients with a myelomeningocele treated in a nonselective, prospective manner.
METHODS: Of the initial 118 children, 71 patients were available for our most recent review. Nineteen patients have been lost to follow-up and 28 patients have died. Data were collected on: motor level, shunt status, education/employment, seizure history, mobility, bladder/bowel continence, tethered cord, scoliosis, latex allergy, posterior cervical decompression, tracheostomy and/or gastrostomy tube.
RESULTS: Mortality (24%) continues to climb into young adulthood. Eighty-six percent of the cohort have cerebrospinal fluid diversion, with 95% having undergone at least one shunt revision. Thirty-two percent have undergone a tethered cord release, with 97% having an improvement or stabilization in their preoperative symptoms. Forty-nine percent have scoliosis, with 43% eventually requiring a spinal fusion. Sixteen patients (23%) have had at least one seizure. Eighty-five percent are attending or have graduated from high school and/or college. More than 80% of young adults have social bladder continence. Approximately 1/3 of patients are allergic to latex, with 6 patients having experienced a life-threatening reaction.
CONCLUSION: At least 75% of children born with a myelomeningocele can be expected to reach their early adult years. Late deterioration is common. One of the greatest challenges in medicine today is establishing a network of care for these adults with spina bifida. Copyright 2001 S. Karger AG, Basel
PMID: 11359098
BACKGROUND: Open spina bifida is the most complex congenital abnormality compatible with long-term survival. This report outlines the 20- to 25-year outcome for our original cohort of patients with a myelomeningocele treated in a nonselective, prospective manner.
METHODS: Of the initial 118 children, 71 patients were available for our most recent review. Nineteen patients have been lost to follow-up and 28 patients have died. Data were collected on: motor level, shunt status, education/employment, seizure history, mobility, bladder/bowel continence, tethered cord, scoliosis, latex allergy, posterior cervical decompression, tracheostomy and/or gastrostomy tube.
RESULTS: Mortality (24%) continues to climb into young adulthood. Eighty-six percent of the cohort have cerebrospinal fluid diversion, with 95% having undergone at least one shunt revision. Thirty-two percent have undergone a tethered cord release, with 97% having an improvement or stabilization in their preoperative symptoms. Forty-nine percent have scoliosis, with 43% eventually requiring a spinal fusion. Sixteen patients (23%) have had at least one seizure. Eighty-five percent are attending or have graduated from high school and/or college. More than 80% of young adults have social bladder continence. Approximately 1/3 of patients are allergic to latex, with 6 patients having experienced a life-threatening reaction.
CONCLUSION: At least 75% of children born with a myelomeningocele can be expected to reach their early adult years. Late deterioration is common. One of the greatest challenges in medicine today is establishing a network of care for these adults with spina bifida. Copyright 2001 S. Karger AG, Basel
PMID: 11359098
Friday, October 12, 2007
Death in shunted hydrocephalic children: a follow-up study
Acakpo-Satchivi L, Shannon CN, Tubbs RS, Wellons JC 3rd, Blount JP, Iskandar BJ, Oakes WJ. Death in shunted hydrocephalic children: a follow-up study. Child's Nervous System. 2007 Jun 27; [Epub ahead of print]
INTRODUCTION: The authors previously conducted a retrospective study regarding deaths from CSF shunt failure to identify circumstances surrounding shunt malfunction-related deaths in children in the modern era.
MATERIALS AND METHODS: Using the same methodology, we conducted a follow-up study to determine whether recent policy and procedural changes instituted since the time of the first study had effected a change in the mortality rate of our shunted patient population.
RESULTS: Thirty-nine original patient records (of patients seen at Children's Hospital who died with the diagnosis of hydrocephalus between 1998 and 2004) were identified and reviewed for inclusion into the study. Only four (10.3%) were found to have died directly as a result of shunt malfunction.
CONCLUSIONS: Our rate of shunt malfunction death has decreased over time. It is reasonable to attribute part of this decline to continued improvements in diagnostic and therapeutic techniques and to the use of surveillance scans to identify asymptomatic patients with shunt failure. However, we believe the majority of this decline is due to two additional factors: (1) increased nursing staff and (2) effective patient/family education.
PMID: 17594102
INTRODUCTION: The authors previously conducted a retrospective study regarding deaths from CSF shunt failure to identify circumstances surrounding shunt malfunction-related deaths in children in the modern era.
MATERIALS AND METHODS: Using the same methodology, we conducted a follow-up study to determine whether recent policy and procedural changes instituted since the time of the first study had effected a change in the mortality rate of our shunted patient population.
RESULTS: Thirty-nine original patient records (of patients seen at Children's Hospital who died with the diagnosis of hydrocephalus between 1998 and 2004) were identified and reviewed for inclusion into the study. Only four (10.3%) were found to have died directly as a result of shunt malfunction.
CONCLUSIONS: Our rate of shunt malfunction death has decreased over time. It is reasonable to attribute part of this decline to continued improvements in diagnostic and therapeutic techniques and to the use of surveillance scans to identify asymptomatic patients with shunt failure. However, we believe the majority of this decline is due to two additional factors: (1) increased nursing staff and (2) effective patient/family education.
PMID: 17594102
Wednesday, July 25, 2007
In-hospital mortality rates after ventriculoperitoneal shunt procedures in the United States, 1998 to 2000: relation to hospital and surgeon volume of
Smith ER, Butler WE, Barker FG 2nd. In-hospital mortality rates after ventriculoperitoneal shunt procedures in the United States, 1998 to 2000: relation to hospital and surgeon volume of care. Journal of Neurosurgery. 2004 Feb;100(2 Suppl Pediatrics):90-7.
OBJECT: Death after ventriculoperitoneal (VP) shunt surgery is uncommon, and therefore it has been difficult to study. The authors used a population-based national hospital discharge database to examine the relationship between annual hospital and surgeon volume of VP shunt surgery in pediatric patients and in-hospital mortality rates.
METHODS: All children in the Nationwide Inpatient Sample (1998-2000, age 90 days-18 years) who underwent VP shunt placement or shunt revision as the principal procedure were included. Main outcome measures were in-hospital mortality rates, length of stay (LOS), and total hospital charges. Overall, 5955 admissions were analyzed (253 hospitals, 411 surgeons). Mortality rates were lower at high-volume centers and for high-volume surgeons. In terms of hospital volume, the mortality rate was 0.8% at lowest-quartile-volume centers (< 28 admissions/year) and 0.3% at highest-quartile-volume centers (> 121 admissions/year). In terms of surgeon volume, the mortality rate was 0.8% for lowest-quartile-volume providers (< nine admissions/year) and 0.1% for highest-quartile-volume providers (> 65 admissions/year). After multivariate adjustment for demographic variables, emergency admission and presence of infection, hospital volume of care remained a significant predictor of death (odds ratio [OR] for a 10-fold increase in caseload 0.38; 95% confidence interval [CI] 0.18-0.81). Surgeon volume of care was statistically significant in a similar multivariate model (OR for a 10-fold increase in caseload 0.3; 95% CI 0.13-0.69). Length of stay was slightly shorter and total hospital charges were slightly higher at higher-volume centers, but the differences were not statistically significant.
CONCLUSIONS: Pediatric shunt procedures performed at high-volume hospitals or by high-volume surgeons were associated with lower in-hospital mortality rates, with no significant difference in LOS or hospital charges.
PMID: 14758935
OBJECT: Death after ventriculoperitoneal (VP) shunt surgery is uncommon, and therefore it has been difficult to study. The authors used a population-based national hospital discharge database to examine the relationship between annual hospital and surgeon volume of VP shunt surgery in pediatric patients and in-hospital mortality rates.
METHODS: All children in the Nationwide Inpatient Sample (1998-2000, age 90 days-18 years) who underwent VP shunt placement or shunt revision as the principal procedure were included. Main outcome measures were in-hospital mortality rates, length of stay (LOS), and total hospital charges. Overall, 5955 admissions were analyzed (253 hospitals, 411 surgeons). Mortality rates were lower at high-volume centers and for high-volume surgeons. In terms of hospital volume, the mortality rate was 0.8% at lowest-quartile-volume centers (< 28 admissions/year) and 0.3% at highest-quartile-volume centers (> 121 admissions/year). In terms of surgeon volume, the mortality rate was 0.8% for lowest-quartile-volume providers (< nine admissions/year) and 0.1% for highest-quartile-volume providers (> 65 admissions/year). After multivariate adjustment for demographic variables, emergency admission and presence of infection, hospital volume of care remained a significant predictor of death (odds ratio [OR] for a 10-fold increase in caseload 0.38; 95% confidence interval [CI] 0.18-0.81). Surgeon volume of care was statistically significant in a similar multivariate model (OR for a 10-fold increase in caseload 0.3; 95% CI 0.13-0.69). Length of stay was slightly shorter and total hospital charges were slightly higher at higher-volume centers, but the differences were not statistically significant.
CONCLUSIONS: Pediatric shunt procedures performed at high-volume hospitals or by high-volume surgeons were associated with lower in-hospital mortality rates, with no significant difference in LOS or hospital charges.
PMID: 14758935
Tuesday, July 24, 2007
Long-term outcome of hydrocephalus management in myelomeningoceles.
Tuli S, Drake J, Lamberti-Pasculli M. Long-term outcome of hydrocephalus management in myelomeningoceles. Child's Nervous System. 2003 Jun;19(5-6):286-91. Epub 2003 May 23.
BACKGROUND: The cerebrospinal fluid (CSF) shunt remains an important ongoing management problem in myelomeningocele (MMC) patients. We reviewed the long-term shunt treatment outcome in a prospectively followed group of MMC patients from a single institution.
METHOD: Patients prospectively entered into a hydrocephalus database with a diagnosis of MMC from the years 1987 to 1996 were selected. All data was verified from the medical records and additional details about the shunt surgery were collected. The outcome of shunt failure was categorized as shunt obstruction, shunt infection, presence of loculated ventricles, overdrainage, and other. All deaths were recorded and causation identified. Univariate analysis for shunt failure risk factors was accomplished using Log rank statistics. Multivariable analysis was performed for each repeated failure level using a conditional Cox regression model.
RESULTS: One hundred and twenty (64%) out of 189 MMC patients experienced a first shunt failure with a median time of 303 days; 29 (24%) of the failures were due to shunt infection (the procedure infection rate being 15%). Sixty-one patients experienced a second shunt failure, 38 a third and 36 had four or more. Multivariable analysis of risk factors failed to demonstrate any clear risk factors for either first or subsequent shunt failure. Fifteen patients died, 13 from either shunt or Chiari 1 complications.
CONCLUSION: Shunt complications remain an important cause of morbidity and mortality in MMC patients, particularly shunt infection.
PMID: 12764629
BACKGROUND: The cerebrospinal fluid (CSF) shunt remains an important ongoing management problem in myelomeningocele (MMC) patients. We reviewed the long-term shunt treatment outcome in a prospectively followed group of MMC patients from a single institution.
METHOD: Patients prospectively entered into a hydrocephalus database with a diagnosis of MMC from the years 1987 to 1996 were selected. All data was verified from the medical records and additional details about the shunt surgery were collected. The outcome of shunt failure was categorized as shunt obstruction, shunt infection, presence of loculated ventricles, overdrainage, and other. All deaths were recorded and causation identified. Univariate analysis for shunt failure risk factors was accomplished using Log rank statistics. Multivariable analysis was performed for each repeated failure level using a conditional Cox regression model.
RESULTS: One hundred and twenty (64%) out of 189 MMC patients experienced a first shunt failure with a median time of 303 days; 29 (24%) of the failures were due to shunt infection (the procedure infection rate being 15%). Sixty-one patients experienced a second shunt failure, 38 a third and 36 had four or more. Multivariable analysis of risk factors failed to demonstrate any clear risk factors for either first or subsequent shunt failure. Fifteen patients died, 13 from either shunt or Chiari 1 complications.
CONCLUSION: Shunt complications remain an important cause of morbidity and mortality in MMC patients, particularly shunt infection.
PMID: 12764629
Death in shunted hydrocephalic children in the 1990s.
Iskandar BJ, Tubbs S, Mapstone TB, Grabb PA, Bartolucci AA, Oakes WJ. Death in shunted hydrocephalic children in the 1990s. Pediatric Neurosurgery. 1998 Apr;28(4):173-6.
Using a combined search of the Children's Hospital (Birmingham, Ala., USA) medical records and the Jefferson County Health Department death records, we reviewed all shunt-related deaths that occurred between January 1990 and July 1996. Of these, we excluded patients who died of nonhydrocephalus-related reasons, such as bronchopulmonary dysplasia, as well as patients who had other serious neurological illnesses such as brain tumor and hydranencephaly. Twenty-eight patients died of shunt-related causes in the 6.5-year period. A survival analysis showed that 96% survived 32 months after first shunting. Of 28 patients, 23 were beyond help prior to medical evaluation. However, at least 10 of these patients had symptoms suggestive of shunt failure at least 24 h and as long as 2 weeks prior to their demise. We conclude that hydrocephalic children still die of shunt failure despite the modern technology of the 1990s. Some of these causes may be avoidable through early detection of symptoms. Guidelines to patients, families, and primary caregivers should be emphasized.
PMID: 9732242
Using a combined search of the Children's Hospital (Birmingham, Ala., USA) medical records and the Jefferson County Health Department death records, we reviewed all shunt-related deaths that occurred between January 1990 and July 1996. Of these, we excluded patients who died of nonhydrocephalus-related reasons, such as bronchopulmonary dysplasia, as well as patients who had other serious neurological illnesses such as brain tumor and hydranencephaly. Twenty-eight patients died of shunt-related causes in the 6.5-year period. A survival analysis showed that 96% survived 32 months after first shunting. Of 28 patients, 23 were beyond help prior to medical evaluation. However, at least 10 of these patients had symptoms suggestive of shunt failure at least 24 h and as long as 2 weeks prior to their demise. We conclude that hydrocephalic children still die of shunt failure despite the modern technology of the 1990s. Some of these causes may be avoidable through early detection of symptoms. Guidelines to patients, families, and primary caregivers should be emphasized.
PMID: 9732242
Death in shunted hydrocephalic children: a follow-up study.
Acakpo-Satchivi L, Shannon CN, Tubbs RS, Wellons JC 3rd, Blount JP, Iskandar BJ, Oakes WJ. Death in shunted hydrocephalic children: a follow-up study. Child's Nervous System. 2007 Jun 27;
INTRODUCTION: The authors previously conducted a retrospective study regarding deaths from CSF shunt failure to identify circumstances surrounding shunt malfunction-related deaths in children in the modern era.
MATERIALS AND METHODS: Using the same methodology, we conducted a follow-up study to determine whether recent policy and procedural changes instituted since the time of the first study had effected a change in the mortality rate of our shunted patient population. RESULTS: Thirty-nine original patient records (of patients seen at Children's Hospital who died with the diagnosis of hydrocephalus between 1998 and 2004) were identified and reviewed for inclusion into the study. Only four (10.3%) were found to have died directly as a result of shunt malfunction.
CONCLUSIONS: Our rate of shunt malfunction death has decreased over time. It is reasonable to attribute part of this decline to continued improvements in diagnostic and therapeutic techniques and to the use of surveillance scans to identify asymptomatic patients with shunt failure. However, we believe the majority of this decline is due to two additional factors: (1) increased nursing staff and (2) effective patient/family education.
PMID: 17594102
INTRODUCTION: The authors previously conducted a retrospective study regarding deaths from CSF shunt failure to identify circumstances surrounding shunt malfunction-related deaths in children in the modern era.
MATERIALS AND METHODS: Using the same methodology, we conducted a follow-up study to determine whether recent policy and procedural changes instituted since the time of the first study had effected a change in the mortality rate of our shunted patient population. RESULTS: Thirty-nine original patient records (of patients seen at Children's Hospital who died with the diagnosis of hydrocephalus between 1998 and 2004) were identified and reviewed for inclusion into the study. Only four (10.3%) were found to have died directly as a result of shunt malfunction.
CONCLUSIONS: Our rate of shunt malfunction death has decreased over time. It is reasonable to attribute part of this decline to continued improvements in diagnostic and therapeutic techniques and to the use of surveillance scans to identify asymptomatic patients with shunt failure. However, we believe the majority of this decline is due to two additional factors: (1) increased nursing staff and (2) effective patient/family education.
PMID: 17594102
Time trends and demographics of deaths from congenital hydrocephalus in children in the United States: 1979 to 1998
Chi JH, Fullerton HJ, Gupta N. Time trends and demographics of deaths from congenital hydrocephalus in children in the United States: National Center for Health Statistics data, 1979 to 1998. Journal of Neurosurgery. 2005 Aug;103(2 Suppl):113-8.
OBJECT: Congenital hydrocephalus has an estimated population incidence of 0.2 to 0.8/1000 live births. With improvements in techniques for cerebrospinal fluid shunting, treatment of hydrocephalus has become safe and routine, yet data describing mortality from congenital hydrocephalus or demonstrating improvements in mortality with the advent of modern treatment are scarce. The authors' analysis sought to rectify this situation.
METHODS: The authors performed an electronic search of National Center for Health Statistics death certificate databases to identify deaths from 1979 to 1998 attributed to congenital hydrocephalus, spina bifida with hydrocephalus, and acquired hydrocephalus (both obstructive and communicating) in all children in the US aged 1 day to 20 years. Mortality rates were defined as deaths per 100,000 person-years and were analyzed for differences on the basis of age, race, sex, and year. The authors identified 10,406 deaths attributed to childhood hydrocephalus within the 20-year study period. The overall mortality rate was 0.71 per 100,00 person-years. Mortality rates were highest in infants, with 3979 deaths; they were similar between girls and boys. Compared with white infants, black infants had higher relative risk (RR) for death caused by congenital hydrocephalus (RR 1.46, p value < 0.0001) and acquired hydrocephalus (RR 2.58, p value < 0.0001) but not for that caused by hydrocephalus with spina bifida (RR 0.65, p value < 0.0001). From 1979 to 1998, the mortality rate due to congenital hydrocephalus declined 66.3%, from spina bifida with hydrocephalus it declined by 30.4%, and from acquired hydrocephalus it declined by 67.5%.
CONCLUSIONS: Mortality rates from childhood hydrocephalus have declined in US children over the previous 20 years. Black race is associated with higher mortality rates in infants for both congenital and acquired hydrocephalus, whereas sex has no effect.
PMID: 16370275
OBJECT: Congenital hydrocephalus has an estimated population incidence of 0.2 to 0.8/1000 live births. With improvements in techniques for cerebrospinal fluid shunting, treatment of hydrocephalus has become safe and routine, yet data describing mortality from congenital hydrocephalus or demonstrating improvements in mortality with the advent of modern treatment are scarce. The authors' analysis sought to rectify this situation.
METHODS: The authors performed an electronic search of National Center for Health Statistics death certificate databases to identify deaths from 1979 to 1998 attributed to congenital hydrocephalus, spina bifida with hydrocephalus, and acquired hydrocephalus (both obstructive and communicating) in all children in the US aged 1 day to 20 years. Mortality rates were defined as deaths per 100,000 person-years and were analyzed for differences on the basis of age, race, sex, and year. The authors identified 10,406 deaths attributed to childhood hydrocephalus within the 20-year study period. The overall mortality rate was 0.71 per 100,00 person-years. Mortality rates were highest in infants, with 3979 deaths; they were similar between girls and boys. Compared with white infants, black infants had higher relative risk (RR) for death caused by congenital hydrocephalus (RR 1.46, p value < 0.0001) and acquired hydrocephalus (RR 2.58, p value < 0.0001) but not for that caused by hydrocephalus with spina bifida (RR 0.65, p value < 0.0001). From 1979 to 1998, the mortality rate due to congenital hydrocephalus declined 66.3%, from spina bifida with hydrocephalus it declined by 30.4%, and from acquired hydrocephalus it declined by 67.5%.
CONCLUSIONS: Mortality rates from childhood hydrocephalus have declined in US children over the previous 20 years. Black race is associated with higher mortality rates in infants for both congenital and acquired hydrocephalus, whereas sex has no effect.
PMID: 16370275
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