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Patients with spina bifida followed at Children's National Medical Center as of June 2009 ranged in age from infancy to 56 years.
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Skin breakdown is a frequent concern for individuals with spina bifida. We explored wound incidence in patients with spina bifida and how it varies across a person's life span and functional neurologic level. We examined the settings in which skin breakdown most commonly occurred, looking for evidence of chronic, non-healing wounds. We also sought...
Citations
... Similarly, in an older Swedish population-based study on teenagers with MMC, 19% had recurrent PIs. 2 Known risk factors of PIs include sensory impairment, which is associated with a higher level of lesion, executive dysfunction, Arnold Chiari II malformation, incontinence, male sex, obesity, and the presence of previous PIs. [20][21][22] The overall purpose was to study PIs in children/ adolescents with MMC. We investigated (1) how many of the participants experienced/had experienced PIs, (2) what factors (country of birth, sex, type of MMC, continence status, and muscle function level (MFL)) were associated with PIs, and (3) the occurrence of PIs in participants who used orthoses on the lower extremities. ...
... The frequency of PIs has been found to increase with age, 20,21,27 and this was supported by our findings. However, because we could not record the exact age of the participants when PIs occurred, it is possible that some participants born during 2007-2010 with multiple assessments had PIs at one of their earlier assessments. ...
Aim:
To investigate the occurrence of pressure injuries (PIs) in children with myelomeningocele (MMC) and to investigate the association between PIs and orthoses use by disability-specific variables.
Methods:
Population-based registry study including participants in the Swedish multidisciplinary follow-up program for MMC. Risks of PIs were investigated by birth cohort, country of birth, sex, type of MMC, muscle function level (MFL), and continence status.
Results:
Of 180 participants, 29% had PIs recorded. Of the 132 participants with >1 assessment records, 17.4% reported multiple PI occasions. More assessments increased the likelihood of PIs (Odds Ratio (OR) = 1.33, 95% CI 1.15-1.54) and participants born 2015-2018 had a lower OR of PIs than those born 2007-2010 (OR = .08, 95% CI = .01-.74). Those at MFL I had lower OR of PIs than those at MFL V (OR = .06, 95% CI .01-.64). Of the 73 participants with orthoses on the lower extremities, 47% reported skin irritations/injuries in the last 4 weeks; 30% reported that it made them stop using orthoses.
Conclusion:
PIs are common even in young children with MMC. Many have recurring skin irritations. Inspecting for PIs should be part of a daily routine and tools to increase compliance are needed.
... For people with spina bifida, skinrelated issues have a significant impact on health, activities of daily living, and quality of life [1,2]. ...
... Although skin issues are not confined to pressure injuries, pressure injury prevention programs have shown as much as a 67% reduction in incidence with a substantial reduction in the cost of care [1]. With that goal in mind, the information campaign to improve skin care awareness and wound prevention, "Did You Look?" is being evaluated as a prevention program [7]. ...
... Refer to wound clinic for any pressure injury at stage three or greater. [1,5,7,12] integrity issues in the spina bifida population. Given the large number of people with spina bifida who present with a pressure injury, prevention is a priority [20]. ...
Purpose:
Skin-related issues have a significant impact on health, activities of daily living, and quality of life among people with spina bifida. Data presented by select clinics that participate in the National Spina Bifida Patient Registry reported that 26% of individuals had a history of pressure injuries with 19% having had one in the past year. The spina bifida community lack direct guidelines on prevention of these and other skin related issues. The Integument (skin) Guidelines focus on prevention, not treatment, of existing problems.
Methods:
Using a consensus building methodology, the guidelines were written by experts in spina bifida and wound care.
Results:
The guidelines include age-grouped, evidence-based guidelines written in the context of an understanding of the whole person. They are presented in table format according to the age of the person with spina bifida.
Conclusion:
These guidelines present a standardized approach to prevention of skin-related issues in spina bifida. Discovering what results in successful minimization of skin-related issues with testing of technology or prevention strategies is the next step in protecting this vulnerable population.
... A large study of pressure ulcers in the general pediatric population followed in out-patient settings showed an overall prevalence of 1.72% [4]. The prevalence of skin breakdown is much higher in patients with myelomeningocele of all ages and functional levels at between 15-82% [5][6][7][8][9], and nearly 14% specifically in pediatric patients [10]. ...
... In the spina bifida population, shunt malfunction and urinary tract problems are the most common reasons for hospitalization in the spina bifida patient population overall [12], but disorders of the skin and subcutaneous tissue was found to be a reason for hospitalization for 14.6% of youth with spina bifida in Canada, as compared to 7.4% for adults [13]. Other risk factors for pressure ulcers in the spina bifida population include male sex, adolescence, wheelchair use, high lesion levels, shunted hydrocephalus, treated Arnold-Chiari malformation, incontinence, memory and sensory deficits, prior orthopedic surgery and prior history of pressure ulcers [5,6]. ...
... The foot is one of the most common sites of skin breakdown among individuals with spina bifida of all ages, most commonly occurring those in with lower lesion levels [5,6,8,10]. Maynard et al. found that foot rigidity, non-plantigrade foot position, and surgical arthrodesis are risk factors for neuropathic foot ulceration in patients with spina bifida [14]. ...
Aim: To determine prevalence, incidence and risk factors for foot pressure ulcers in ambulatory children with spina bifida.
Method: Retrospective cohort study of 72 ambulatory children (age range 0–23.9 years) with spina bifida treated at a pediatric tertiary care facility. Data on foot pressure ulcers were recorded and analyzed to determine prevalence, incidence and predictive factors.
Results: Foot pressure ulcers occurred in 50/143 limbs (35%) over 10.5 ± 3.5 years. Average incidence was 0.10 foot pressure ulcer incidents per person-year, and prevalence in years with complete follow-up was 8.8%. Prevalence was related to age [higher for ages 11–15 (17%), than ages 0–10 (5%) and 16+ years (7%), p < 0.0001], and varus/valgus foot deformities (p < 0.001) and brace use (0.32 risk difference, p = 0.01), but not with standing foot position, deformity rigidity, body mass index, spina bifida type, lesion level, ambulatory level or co-morbidities. Most common sites were the heel (21/96, 22%), lateral malleolus (12/96, 13%), and plantar 5th metatarsal head (11/96, 12%).
Conclusion: Foot pressure ulcers occur in nearly 1 out of 10 ambulatory children with spina bifida, most often in pre-teens or young teen-agers with foot deformities, who use braces. This information can help direct skin care education and prevention to those most vulnerable.
• Implications for Rehabilitation
• Foot pressure ulcers occur in children and adolescents with spina bifida, most commonly in those aged 11-15 years, with foot deformities and who use braces.
• Ulcer development was unrelated to stiffness of foot deformity, body mass index, lesion or functional level, or presence of comorbidities such as Arnold-Chiari malformation, syringomyelia or shunted hydrocephalus.
• Skin care education and preventative measures should be provided to all patients, but with particular emphasis for those with these risk factors.
... the risk factors for developing pressure injuries among patients with SB, which include higher lesion level, shunt presence, older age, male sex, prior orthopedic surgery, wheelchair use, obesity, reduced executive functioning, memory deficits, Chiari II malformation, sensory deficits, and urinary incontinence. [6][7][8] Individuals with spinal cord injury have similar vulnerabilities, and the relationship between pressure injuries and health care utilization have been relatively well studied in this population. A higher presence of pressure ulcers was found in individuals with spinal cord injury and pneumonia. ...
... Patients with SB are prone to pressure injuries and pressure injuries have a significant effect on their morbidity, mortality, and quality of life. [6][7][8] In this study, we build upon previous work and address an information gap by estimating length of stay and costs associated with pressure injuries among hospitalizations of patients with SB. After successful propensity score matching based on demographic, clinical, and hospital characteristics, we found significant increases in the length of stay and the costs associated with pressure injuries. ...
... In an open-cohort study of SB patients, most wounds (260/275) were community acquired. 6 We excluded hospitalizations associated with death because end-of-life care and pressure injuries can be different from hospitalizations not related to death. According to this criterion, we excluded 214 (0.98%) hospitalizations associated with death among all hospitalizations of patients with SB. ...
Objective:
To estimate differences in the length of stay and costs for comparable hospitalizations of patients with spina bifida (SB) with and without pressure injuries.
Design:
Retrospective, cross-sectional, observational study.
Setting:
Nationwide Inpatient Sample from years 2010-2014.
Participants:
Hospitalizations of patients with SB (N=7776). Hospitalizations among patients with SB and pressure injuries (n=3888) were matched to hospitalizations among patients with SB but without pressure injuries (n=3888).
Interventions:
Not applicable.
Main outcome measures:
Differences in length of stay and total costs between the 2 groups.
Results:
After successful matching, multivariate modeling of costs and length of stay on matched sample showed that hospitalizations with pressure injuries had an increased 1.2 inpatient days and excess average costs of $1182 in 2014 dollars.
Conclusions:
The estimated average cost of hospitalization increased by 10%, and the estimated average length of stay increased by 24% in the presence of pressure injuries among hospitalized patients with SB, compared with their peers without these injuries. These results highlight the substantial morbidity associated with pressure injuries, which are potentially preventable before or during hospitalizations among persons with SB.
... Individuals with spina bifida may manifest impairments in mobility, sensation, bowel and bladder continence, and executive function. Skin breakdown is a common problem in individuals with spina bifida due to sensory and motor dysfunction (2,3,4,5,6,7,8). It can lead to infection, loss of function, amputation, and death. ...
... Understanding factors associated with the development of skin breakdown may facilitate prevention. Recent studies (5,7) that have explored factors associated with skin breakdown in all locations have noted an association of pressure ulcers with a more proximal functional lesion level. This is intuitive for skin breakdown involving the sacrum or ischium, since patients with more proximal levels of lesion are less likely to be ambulatory, spend more time sitting, and have greater sensory dysfunction. ...
... Patients with MMC tend to manifest greater impairments in sensation and mobility and have been shown in previous studies to have a higher prevalence of skin breakdown compared with non-MMC patients (5,10,11). Multiple studies have also shown that age is a risk factor for skin breakdown (5,7,13). To date, no studies have explored the relationship of foot shape or history of previous foot surgery to skin breakdown of the foot in spina bifida, though Kim et al. noted an association of orthopedic surgery above the knee with overall skin breakdown (5). ...
Purpose:
Recent studies on patients with spina bifida have noted an increased incidence of skin breakdown with more proximal functional neurologic level. We hypothesized that there would be an inverse relationship between skin breakdown of the foot and severity of functional level of lesion, because patients with more caudal levels of lesion spend more time ambulating.
Methods:
The National Spina Bifida Patient Registry (NSBPR) at Children's of Alabama was queried for the presence of skin breakdown of the foot, ambulatory status, functional neurologic level, and diagnosis of myelomeningocoele (MMC) vs. non-myelomeningocoele (non-MMC). Univariate and multivariate analysis were performed.
Results:
Of 491 total patients, 378 were MMC and 113 were non-MMC. Eighty-five of 378 (22.5%) patients with MMC and 5 of 113 (4.4%) non-MMC patients reported skin breakdown (p= 0.009). Thoracic and lumbar levels were compared to the sacral level for statistical analysis. Skin breakdown occurred in 26.2% of thoracic (p= 0.001), 33.3% of high-lumbar (p= 0.001), 21.5% of mid-lumbar (p= 0.008), 26.2% of low-lumbar (p= 0.001), and 6.1% of sacral level patients. Ambulatory status was not significant on multivariate analysis.
Conclusion:
A diagnosis of MMC is a significant, independent risk factor for skin breakdown of the foot. Compared to sacral level, thoracic and lumbar levels of function were also independently significant. Ambulatory status was not significant.
... Skin breakdown occurs more frequently as age increases and is a potentially preventable cause of morbidity and mortality in SB. 7,8 Being aware of this risk, educating patients and families about preventive strategies, and routinely monitoring for skin breakdown is an important task for the PCP. ...
... The majority of persons with SB have had a wound primarily caused by prolonged pressure [7]. The incidence of pressure ulcers in this group correlated with incontinence and lack of adherence to self-care programs [8][9][10]. ...
Individuals with spina bifida (SB) are vulnerable to chronic skin complications such as wounds on the buttocks and lower extremities. Most of these complications can be prevented with adherence to self-care routines. We have developed a mobile health (mHealth) system for supporting self-care and management of skin problems called SkinCare as part of an mHealth suite called iMHere (interactive Mobile Health and Rehabilitation). The objective of this research is to develop an innovative mHealth system to support self-skincare tasks, skin condition monitoring, adherence to self-care regimens, skincare consultation, and secure two-way communications between patients and clinicians.
In order to support self-skincare tasks, the SkinCare app requires three main functions: (1) self-care task schedule and reminders, (2) skin condition monitoring and communications that include imaging, information about the skin problem, and consultation with clinician, and (3) secure two-way messaging between the patient and clinician (wellness coordinator). The SkinCare system we have developed consists of the SkinCare app, a clinician portal, and a two-way communication protocol connecting the two. The SkinCare system is one component of a more comprehensive system to support a wellness program for individuals with SB.
The SkinCare app has several features that include reminders to perform daily skin checks as well as the ability to report skin breakdown and injury, which uses a combination of skin images and descriptions. The SkinCare app provides reminders to visually inspect one’s skin as a preventative measure, often termed a “skin check.” The data is sent to the portal where clinicians can monitor patients’ conditions. Using the two-way communication, clinicians can receive pictures of the skin conditions, track progress in healing over time, and provide instructions for how to best care for the wound.
The system was capable of supporting self-care and adherence to regimen, monitoring adherence, and supporting clinician engagement with patients, as well as testing its feasibility in a long-term implementation. The study shows the feasibility of a long-term implementation of skincare mHealth systems to support self-care and two-way interactions between patients and clinicians.
... A recent cohort study over a 13-year period found that age, wheelchair use, bare feet, obesity, and reduced executive functioning are key risk factors for wound development. 13 Another small questionnaire-based study of 87 adults with myelomeningocele showed a higher prevalence of pressure ulcers in individuals with memory deficits, Chiari II malformation, and sensory deficit. 14 For young adults with myelomeningocele, the number of ulcers has also been found to be associated with motor and educational level. ...
... Pressure ulcers were more common in individuals with a higher level of lesions in the study, which is consistent with the findings of Ottolini et al. 13 In general, higher lesion levels are generally associated with higher degrees of paralysis and sensory loss, which may explain the higher rates of pressure ulcers. Wheelchair use was also associated with ulcers, which is not surprising because prolonged sitting and immobility may predispose to pressure ulcers. ...
... After neurological surgeries, we found that ulcers were more likely to occur in the shunted group. 13 Bladder incontinence was another factor associated with ulcers, whereas bowel incontinence was not. Work by others has suggested that urinary incontinence may be a more accurate predictor than fecal incontinence in individuals with spinal cord injury, 22,23 and it has been well demonstrated that incontinence and moisture are strongly associated with pressure ulcers. ...
To describe factors associated with pressure ulcers in individuals with spina bifida (SB) enrolled in the National Spina Bifida Patient Registry (NSBPR).
unbalanced longitudinal, multicenter cohort study.
Nineteen SB clinics throughout the U.S.
Not applicable PARTICIPANTS: Individuals with SB (N=3153) enrolled in 19 clinic sites that participate in the NSBPR.
Pressure ulcer status (yes/no) at annual visit between 2009 and 2012.
Of 3153 total participants, 19% reported ulcers at their most recent annual clinic visit. Seven factors, i.e., level of lesion, wheelchair use, urinary incontinence, shunt presence, above the knee orthopedic surgery, recent surgery, and male gender were significantly associated with the presence of pressure ulcers. Of these factors, the final logistic regression model included level of lesion, urinary incontinence, recent surgery, and male gender. The three adjusting variables SB type, SB clinic, and age group were significant in all analyses (all p<.001).
Adjusting for SB type, SB clinic, and age group, we found seven factors, level of lesion, wheelchair use, urinary incontinence, shunt presence, above the knee orthopedic surgery, recent surgery, and male gender were associated with pressure ulcers. Identifying key factors associated with onset of pressure ulcers can be incorporated into clinical practice in ways to prevent and enhance treatment for pressure ulcers in the SB population.
Copyright © 2015 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
... Often the individuals have a diminished bladder-and/or bowel function that calls for strict adherence to routines for emptying bladder and bowel but also for preventive measures to support a smooth stool and avoid constipation and hygienic handle of urine catheters to avoid urinary tract infections. Most individuals with SB have a diminished bodily sensation and therefore are not able to feel when the skin is at risk for pressure sores [6]. Such sores primarily develop on the individuals' but and feet and are therefore not easy to notice or inspect for the individuals themselves. ...
Background: An individual with SB needs to deal with long standing illnesses and is often viewed as having a disability that needs to be compensated for. This medical condition is an example of malfunction of the body, though congenital, and could be seen as an outside-perspective to the individual human being. It is important that the required medical treatment is offered to an individual with SB, but such medical treatment alone would not encompass the full health spectrum for an individual in this specific situation. A question to be raised is how this specific group of individuals experience health. Aim: To describe the experience of daily life for young adults with SB through a theoretical lens of health. Method: This qualitative study was conducted using a reflective lifeworld approach with an interpretive part. In the lifeworld theory it is understood that all our doings, feelings and thoughts are experienced through the lifeworld. The interview questions were open and non-standardised. Findings: The main theme was formulated as The contradictory path towards well-being in daily life, and was constructed on the sub-themes: Not understanding and taking responsibility for the lower body, Having people standing behind me—not being allowed to grow up myself, Compared to people like me, I usually do well, I thought it would work out by itself, and A lack of structure in daily life. Conclusion: The study indicates that young adults with SB have a diminished health and well-being and that they have a contradictory path to travel towards independency which is of great concern for this group of individuals. Differences in views of independence constitute a problem and it is important for health care providers to be aware of the individuals’ perspective on independence. This notion is something that needs to be taken into account when designing support programs for these individuals.
