Urologic Congenitalism Urologic Problems in Spina Bifida Patients Transitioning to Adult Care Stephen J. Summers, Sean Elliott, Sean McAdams, Siam Oottamasathien, William O. Brant, Angela P. Presson, Joseph Fleck, Jeremy West, and Jeremy B. Myers OBJECTIVE
METHODS
RESULTS
CONCLUSION
To identify the urologic needs of adult patients with spina bifida (SB) at the time of their transition from pediatric to adult care. We hypothesized that delays in transition to adult care would be associated with higher rates of active problems. We retrospectively reviewed patients seen at adult dedicated SB clinics at the Universities of Utah and Minnesota from April 2011 to April 2012. We reviewed bladder management, urologic problems, time from last urologic care, and necessary interventions. We identified 65 patients from these clinics with SB. The mean age was 30.6 years (standard deviation, 11.3). The median time since last urologic evaluation at Utah and Minnesota was 17 months and 12 months, respectively (range 1 month-10 years). Fifty-five patients (85%) reported a urologic problem at the time of their visit. Urinary incontinence was most common in 34 (52%), followed by recurrent urinary tract infection in 22 (34%), catheterization troubles in 8 (12%), and calculi in 6 (9%). Sixty-three patients (97%) required some sort of intervention. These were diagnostic (cystoscopy, ultrasonography, computed tomography scan, urodynamics) in 50 patients (77%), surgical (urinary diversion, onabotulinum toxin A injection, stone surgery, and so forth) in 22 (34%), and medical (antimicrobial prophylaxis, bladder irrigations, anticholinergics, self-catheterization) in 16 (25%). There was no association between longer transition times and higher rates of active problems. On presentation to adult SB clinics, patients had many active urologic problems and operative management was often needed; however, there was no association between longer transition times and higher rates of active problems. UROLOGY 84: 440e444, 2014. 2014 Elsevier Inc.
S
pina bifida (SB) is the most common congenital abnormality of the spinal cord. The incidence is 3.1 per 10,000 children in the United States.1 SB was once considered a pediatric disease; however, increasing advances in medical and surgical care now enable most affected individuals to live well into adulthood.2 Because SB affects multiple organ systems, a multidisciplinary approach is needed to deal with both the chronic surgical and medical issues, as well as patients’ physical and cognitive limitations secondary to their disease. Management of the urologic problems in SB patients proves to be a critical part of maintaining quality
Financial Disclosure: The authors declare that they have no relevant financial interests. Funding Support: This investigation was supported by the University of Utah Study Design and Biostatistics Center, with funding in part from the National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant 8UL1TR000105 (formerly UL1RR025764). From the Department of Surgery, The Center for Reconstructive Urology and Men’s Health, University of Utah, Salt Lake City, UT; Division of Urology, Department of Surgery, the Primary Children’s Medical Center, University of Utah, Salt Lake City, UT; and the Department of Urology, Children’s Hospitals and Clinics of Minnesota, University of Minnesota, Minneapolis, MN Reprint requests: Stephen J. Summers, M.D., Urology Division, Department of Surgery, University of Utah, 30 North 1900 East, Room 3B420, Salt Lake City, UT 84132. E-mail: [email protected] Submitted: January 20, 2014, accepted (with revisions): March 31, 2014
440
ª 2014 Elsevier Inc. All Rights Reserved
of life as well as avoiding or limiting complications such as chronic urinary tract infections (UTIs), recurrent urolithiasis, and renal failure. These problems are estimated to occur in as many as 24%-94% of adults with SB.3 Some institutions have started multidisciplinary clinics in an effort to more effectively manage these complex patients. Most of these clinics involve urology and other specialties such as orthopedic surgery, neurosurgery, physical and occupational therapy, pediatrics, psychiatry, nutrition, social work, and nursing support teams. Not only is this in an effort to make care more convenient for these patients and their families, but to also intervene early and prevent complications as a result of delayed care. In a multisystem medical problem like SB, each patient presents with unique challenges, medical problems, and limitations in psychosocial, cognitive, and physical abilities. One such challenge specific to this population is transitioning to adult care. Many studies have identified the various challenges and barriers to successful transition. Binks et al4 identified such barriers as the reluctance of pediatric providers to stop seeing their patients, patient reluctance to leave familiar pediatric centers, and a real or perceived lack of interest by http://dx.doi.org/10.1016/j.urology.2014.03.041 0090-4295/14/$36.00
Table 1. Demographic information and previous surgical interventions for patients meeting inclusion criteria at both institutions Variable Transition time, mo, median (IQR)* Age, y, mean SD Sex, N (%)* Male Female Previous urologic surgery Previous bladder augmentation
University of Minnesota (N ¼ 32)
University of Utah (N ¼ 33)
Combined Data (N ¼ 65)
12.2 (7.8-17.6) 33.8 12.5
17.0 (4.5-37.5) 27.5 9.0
13.8 (7.0-30.0) 30.6 11.3
14 18 19 10
(43.8) (56.2) (59.4) (31.2)
18 14 19 9
(56.2) (43.8) (57.6) (27.3)
32 32 38 19
(50.0) (50.0) (58.5) (29.2)
IQR, interquartile range; SD, standard deviation. * Transition time had 16 missing values, 6 from University of Minnesota and 10 from University of Utah; sex had one missing value from the University of Utah.
adult providers. Other possible barriers include change in insurance, the distance to a tertiary care center, new found patient autonomy, and simply a lack of education on the importance of regular follow-up. One study suggested that up to two-thirds of adults with SB do not routinely seek regular urologic follow-up.5 It has not been well defined whether these barriers to the transition to adult care in SB patients are associated with measurable delays in follow-up care and any subsequent sequelae. The primary purpose of our study was to identify the urologic needs of adult SB patients. We hypothesized that a delay in follow-up would be associated with an increased number and severity of urologic problems.
MATERIALS AND METHODS Patients aged >18 years with SB who attended the multidisciplinary SB clinics at the University of Utah and Gillette Lifetime Specialty Healthcare (staffed from the University of Minnesota; henceforth referred to simply as Minnesota at Gillette) from April 2011 to April 2012 were included in this retrospective study. Most of these patients were referred directly from a pediatric multidisciplinary SB clinic. After obtaining institutional review board approval at both universities, we reviewed the patients’ records for methods of current bladder management, clinician defined urologic problems, time to presentation after referral from pediatric care or the last time the patient was seen by a urologist, compliance with needed screening, and required surgical and medical interventions. At each institution, there was no predetermined age for making the transition to adult care. Transition time was calculated from the date of the patient’s last urologic follow-up to their first SB adult clinic visit. The prevalence of urologic problems during transition to adult care in SB patients were described using mean and standard deviation, median, and interquartile range, or counts and percentages. A Wilcoxon rank-sum test was used to compare transition time to any urologic problem and individual urologic problems. Problems identified by the urologists included urinary incontinence, fecal incontinence, recurrent UTIs, stones, catheter problems, previous surgery, and any required urologic interventions (diagnostic, medical, or surgical). The active problems were identified at the time of the first adult multidisciplinary clinic visit and included both new and persistent longterm problems. UTI was self-reported by patients. No attempt was made to quantify incontinence and it was recorded as significant if it was a bother to the patient. UROLOGY 84 (2), 2014
An additional analysis was performed on the rates of UTI, urinary incontinence, and antibiotic use in patients who had undergone childhood augmentation cystoplasty, compared with those who had not using a chi square test (or the Fisher exact test if any expected cell counts were
METHODS
RESULTS
CONCLUSION
To identify the urologic needs of adult patients with spina bifida (SB) at the time of their transition from pediatric to adult care. We hypothesized that delays in transition to adult care would be associated with higher rates of active problems. We retrospectively reviewed patients seen at adult dedicated SB clinics at the Universities of Utah and Minnesota from April 2011 to April 2012. We reviewed bladder management, urologic problems, time from last urologic care, and necessary interventions. We identified 65 patients from these clinics with SB. The mean age was 30.6 years (standard deviation, 11.3). The median time since last urologic evaluation at Utah and Minnesota was 17 months and 12 months, respectively (range 1 month-10 years). Fifty-five patients (85%) reported a urologic problem at the time of their visit. Urinary incontinence was most common in 34 (52%), followed by recurrent urinary tract infection in 22 (34%), catheterization troubles in 8 (12%), and calculi in 6 (9%). Sixty-three patients (97%) required some sort of intervention. These were diagnostic (cystoscopy, ultrasonography, computed tomography scan, urodynamics) in 50 patients (77%), surgical (urinary diversion, onabotulinum toxin A injection, stone surgery, and so forth) in 22 (34%), and medical (antimicrobial prophylaxis, bladder irrigations, anticholinergics, self-catheterization) in 16 (25%). There was no association between longer transition times and higher rates of active problems. On presentation to adult SB clinics, patients had many active urologic problems and operative management was often needed; however, there was no association between longer transition times and higher rates of active problems. UROLOGY 84: 440e444, 2014. 2014 Elsevier Inc.
S
pina bifida (SB) is the most common congenital abnormality of the spinal cord. The incidence is 3.1 per 10,000 children in the United States.1 SB was once considered a pediatric disease; however, increasing advances in medical and surgical care now enable most affected individuals to live well into adulthood.2 Because SB affects multiple organ systems, a multidisciplinary approach is needed to deal with both the chronic surgical and medical issues, as well as patients’ physical and cognitive limitations secondary to their disease. Management of the urologic problems in SB patients proves to be a critical part of maintaining quality
Financial Disclosure: The authors declare that they have no relevant financial interests. Funding Support: This investigation was supported by the University of Utah Study Design and Biostatistics Center, with funding in part from the National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant 8UL1TR000105 (formerly UL1RR025764). From the Department of Surgery, The Center for Reconstructive Urology and Men’s Health, University of Utah, Salt Lake City, UT; Division of Urology, Department of Surgery, the Primary Children’s Medical Center, University of Utah, Salt Lake City, UT; and the Department of Urology, Children’s Hospitals and Clinics of Minnesota, University of Minnesota, Minneapolis, MN Reprint requests: Stephen J. Summers, M.D., Urology Division, Department of Surgery, University of Utah, 30 North 1900 East, Room 3B420, Salt Lake City, UT 84132. E-mail: [email protected] Submitted: January 20, 2014, accepted (with revisions): March 31, 2014
440
ª 2014 Elsevier Inc. All Rights Reserved
of life as well as avoiding or limiting complications such as chronic urinary tract infections (UTIs), recurrent urolithiasis, and renal failure. These problems are estimated to occur in as many as 24%-94% of adults with SB.3 Some institutions have started multidisciplinary clinics in an effort to more effectively manage these complex patients. Most of these clinics involve urology and other specialties such as orthopedic surgery, neurosurgery, physical and occupational therapy, pediatrics, psychiatry, nutrition, social work, and nursing support teams. Not only is this in an effort to make care more convenient for these patients and their families, but to also intervene early and prevent complications as a result of delayed care. In a multisystem medical problem like SB, each patient presents with unique challenges, medical problems, and limitations in psychosocial, cognitive, and physical abilities. One such challenge specific to this population is transitioning to adult care. Many studies have identified the various challenges and barriers to successful transition. Binks et al4 identified such barriers as the reluctance of pediatric providers to stop seeing their patients, patient reluctance to leave familiar pediatric centers, and a real or perceived lack of interest by http://dx.doi.org/10.1016/j.urology.2014.03.041 0090-4295/14/$36.00
Table 1. Demographic information and previous surgical interventions for patients meeting inclusion criteria at both institutions Variable Transition time, mo, median (IQR)* Age, y, mean SD Sex, N (%)* Male Female Previous urologic surgery Previous bladder augmentation
University of Minnesota (N ¼ 32)
University of Utah (N ¼ 33)
Combined Data (N ¼ 65)
12.2 (7.8-17.6) 33.8 12.5
17.0 (4.5-37.5) 27.5 9.0
13.8 (7.0-30.0) 30.6 11.3
14 18 19 10
(43.8) (56.2) (59.4) (31.2)
18 14 19 9
(56.2) (43.8) (57.6) (27.3)
32 32 38 19
(50.0) (50.0) (58.5) (29.2)
IQR, interquartile range; SD, standard deviation. * Transition time had 16 missing values, 6 from University of Minnesota and 10 from University of Utah; sex had one missing value from the University of Utah.
adult providers. Other possible barriers include change in insurance, the distance to a tertiary care center, new found patient autonomy, and simply a lack of education on the importance of regular follow-up. One study suggested that up to two-thirds of adults with SB do not routinely seek regular urologic follow-up.5 It has not been well defined whether these barriers to the transition to adult care in SB patients are associated with measurable delays in follow-up care and any subsequent sequelae. The primary purpose of our study was to identify the urologic needs of adult SB patients. We hypothesized that a delay in follow-up would be associated with an increased number and severity of urologic problems.
MATERIALS AND METHODS Patients aged >18 years with SB who attended the multidisciplinary SB clinics at the University of Utah and Gillette Lifetime Specialty Healthcare (staffed from the University of Minnesota; henceforth referred to simply as Minnesota at Gillette) from April 2011 to April 2012 were included in this retrospective study. Most of these patients were referred directly from a pediatric multidisciplinary SB clinic. After obtaining institutional review board approval at both universities, we reviewed the patients’ records for methods of current bladder management, clinician defined urologic problems, time to presentation after referral from pediatric care or the last time the patient was seen by a urologist, compliance with needed screening, and required surgical and medical interventions. At each institution, there was no predetermined age for making the transition to adult care. Transition time was calculated from the date of the patient’s last urologic follow-up to their first SB adult clinic visit. The prevalence of urologic problems during transition to adult care in SB patients were described using mean and standard deviation, median, and interquartile range, or counts and percentages. A Wilcoxon rank-sum test was used to compare transition time to any urologic problem and individual urologic problems. Problems identified by the urologists included urinary incontinence, fecal incontinence, recurrent UTIs, stones, catheter problems, previous surgery, and any required urologic interventions (diagnostic, medical, or surgical). The active problems were identified at the time of the first adult multidisciplinary clinic visit and included both new and persistent longterm problems. UTI was self-reported by patients. No attempt was made to quantify incontinence and it was recorded as significant if it was a bother to the patient. UROLOGY 84 (2), 2014
An additional analysis was performed on the rates of UTI, urinary incontinence, and antibiotic use in patients who had undergone childhood augmentation cystoplasty, compared with those who had not using a chi square test (or the Fisher exact test if any expected cell counts were
