Nutrition, metabolic syndrome, and obesity: Guidelines for the care of people with spina bifida
Abstract
Nutritional challenges and a lack of activity can lead to health problems across the lifespan for people with spina bifida. Children and adults with spina bifida are also at greater risk of being classified as overweight or obese compared to their peers without the condition. Therefore, early recognition of nutrition problems, weight management counseling, and timely referrals for evaluation and management of diet and activity can help those with spina bifida and their families achieve a healthy lifestyle. This article details the development of the Nutrition, Metabolic Syndrome and Obesity Guidelines, which are part of the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida. It discusses the identification and management of poor nutrition and prevention of obesity for children, adolescents, and adults with spina bifida and highlights areas requiring further research.
1.Introduction
Good nutrition is important for everyone to maximize health and wellness [1]. Healthcare providers are therefore often tasked with providing essential nutritional education to assist individuals incorporate healthful changes in eating patterns and behavior. Those with spina bifida often experience unique challenges related to healthy dietary intake [2], which can affect many areas of health and wellness across their lifespan. People with spina bifida also have elevated rates of obesity [3] which can affect health, independence and quality of life [4]. This manuscript details the development and recommendations of the Nutrition, Metabolic Syndrome, and Obesity guidelines for individuals of all ages with spina bifida.
During infancy, some babies with spina bifida may experience slow weight gain and inadequate nutrition. Initial prolonged hospitalizations can negatively impact breast-feeding and bonding between infant and parents [5]. A complex interplay of medical and social factors can affect the nutritional intake of children as they grow, including brain stem dysfunction, shunt obstruction, silent aspiration, sleep apnea, recurrent infections, and altered feeding dynamics related to frequent hospitalization and caregiver stress [2].
As they grow older, children with spina bifida who have a latex allergy may limit their intake of fresh fruits and vegetables due to cross-reacting foods (see the Latex Guideline at https://www.spinabifidaassociation. org/guidelines/). Those with the Chiari II malformation may have an aversion to textured foods, which limits their dietary intake to highly processed food with low nutritional value [6]. Furthermore, many often have a neurogenic bowel [7]. Ensuring good bowel control may be more important to people when considering their dietary intake than the overall nutritional value of food [8, 90]. Other psychosocial factors affecting nutritional intake include socioeconomic status. It is well documented that people with disabilities and their families frequently have lower incomes [10], which can result in food insecurity, a lack of access to sources of healthy food and inaccessible cooking environments [11]. When families are faced with these circumstances, the risks of poor nutrition affect the whole family, not just the individual with spina bifida.
The consequences of poor eating habits can be serious, including vitamin deficiencies, anemia, malnutrition, poor growth and/or excessive weight gain [2]. In turn, these can lead to constipation, skin breakdown, osteoporosis, hypertension, diabetes, cardiovascular disease and other preventable secondary conditions [12], which can require healthcare services including hospitalizations [13]. Previous studies estimated that 47% of hospital admissions for people with spina bifida were for potentially preventable secondary conditions [14], many of which may have been addressed with good nutrition. Therefore, it is critical that healthcare providers work with children, families and adults with spina bifida to emphasize the importance of healthy nutrition and a balanced diet on overall health and wellness [15].
Weight-management is an important component of delivering high-quality health care for people with spina bifida [3]. In a recent survey, 40% of parents of adult children with spina bifida and 44% of adults with spina bifida rated weight-management as one of their top five priority issues [16].
Most children with spina bifida follow typical growth patterns until they are around four years of age; after that time, increased fat mass (versus lean mass) has been found when compared with children without spina bifida [17]. The prevalence of obesity in children with spina bifida has been calculated to be approximately twice that of their typically developing peers, with numbers cited up to 50% in children, and 64% in young adults [3, 18, 19]. A complex interaction of physiological, environmental, psychosocial and physical factors predisposes people with spina bifida to having obesity [3, 90]. Mobility impairments, inaccessible health promoting spaces, reduced incomes, lower resting energy expenditure and social isolation can all contribute to weight gain [20, 21]. In addition, girls with spina bifida diagnosed with premature puberty may experience weight gain [22]. Weight gain is also commonly seen in women with spina bifida and Polycystic Ovary Syndrome [23].
Obesity in children is usually defined as a certain Body Mass Index (BMI) above a given percentile for age and gender [24]. BMI in adults is calculated as a person’s weight in kilograms divided by the square of height in meters, with obesity defined as a BMI
Although contemporary weight science shows that higher weights do not automatically infer poor health [28], they can be associated with cardiovascular disease, diabetes, and musculoskeletal disorders [4, 29]. For those with spina bifida, increasing body weight can affect mobility, leading to a sedentary lifestyle that can worsen the imbalance between caloric intake and expenditure [13]. In addition, higher weights in spina bifida may lead to increased pain, skin breakdown, sleep apnea and decreased independence [14, 30]. It is also important to note that people with obesity, including those with spina bifida, often experience weight bias and discrimination; this initiates a cycle whereby the experience of weight stigma increases cortisol and metabolic abnormalities, contributing to higher weight and further increasing stigmatization [31]. It is critical, then, that healthcare providers do not stigmatize people with spina bifida who have higher weights, even unintentionally [32, 33]. Focusing solely on weight loss can have the opposite effect and may encourage disordered eating in people with spina bifida [34]. Therefore, the guidelines presented here describe how healthcare providers can take a collaborative, strengths-based approach to promote the benefits of healthy nutrition more broadly (see also the Health Promotion Guidelines and Physical Activity Guidelines at https://www.spinabifidaassociation.org/guidelines/).
Also, this approach aims to reduce the clustering of risk factors that can lead to metabolic syndrome, which includes three or more of the following risk factors: hyperglycemia, increased central adiposity, elevated triglycerides, decreased high-density lipoprotein cholesterol, and elevated blood pressure, although the exact diagnostic cut-offs vary between children and adults [35]. While data are lacking on metabolic syndrome in adults with spina bifida, some research has addressed risk factors in younger people. For example, one study identified metabolic syndrome in 32.4% of adolescents aged 11–20 years with spina bifida, with only six percent of the participants showing zero metabolic syndrome risk factors [36]. As a comparison, levels of metabolic syndrome in a general childhood/adolescent population have been reported to be approximately nine percent [35]. In a young adult population (16–30 years), 42% showed at least two risk factors for cardiovascular disease including total cholesterol, high density lipoprotein, systolic blood pressure and smoking [37]. Although some of these metabolic syndrome risk factors cannot be impacted by nutrition (e.g. smoking), it is important for healthcare providers to explain the link between a healthy dietary intake and reduced cardiovascular disease risk factors.
2.Summary and gaps
Given the benefits of healthy nutrition, the aim of these guidelines is to present the best available evidence for providing nutritional information to people with spina bifida across their lifespan. These guidelines also provide suggestions for how healthcare providers can approach weight-related conversations, as well as strategies for obesity prevention and management. Where relevant, recommendations for assessment of risk factors for metabolic syndrome have been provided.
3.Guidelines goals and objectives
The goals of the Nutrition, Metabolic Syndrome and Obesity Guidelines were both practical and aspirational. The objectives were to:
Primary objective
• Maximize and support wellness through the lifespan
Secondary objective
• Reduce and prevent secondary health conditions related to poor nutrition and overweight/obesity, including metabolic syndrome.
Tertiary objective
• Support the development of client/caregiver know-ledge, self-management skills, and self-efficacy related to nutrition and dietary habits.
4.Methods
The Nutrition, Metabolic Syndrome and Obesity working group was convened in 2016 to create a new section that had not been included in the previous 2006 guidelines [38]. Initially, the Nutrition and Obesity guideline was distinct from the Metabolic Syndrome guideline. However, the two working groups identified that there was substantial overlap and thus they were combined with the approval of the Spina Bifida Association Steering Committee Chairs. The methodology used to create the guideline has been reported in detail elsewhere [39]. In brief, the working group members were identified by the Spina Bifida Association’s Professional Advisory Council. One content expert was nominated to lead the work (ACM) with other members providing support in their area of expertise. A comprehensive literature review was conducted on the guideline’s topic, supplemented by literature identified by the working group to ensure the content was informed by the best available evidence. The group created the objectives through consensus and the outline of the guideline followed a template provided by the Spina Bifida Association. This specified the sections to be included: Introduction, Outcomes, Clinical Questions, Guidelines and Research Gaps. Because Nutrition, Metabolic Syndrome and Obesity were not included in the 2006 guidelines, all material was newly created. Clinical questions that informed the guidelines can be found in Table 1.
Table 1
Clinical questions that informed the nutrition, metabolic syndrome and obesity guidelines
| Age group | Clinical questions |
|---|---|
| 0–11 months |
|
| 1–2 years 11 months |
|
| 3–5 years 11 months |
|
| 6–12 years 11 months |
|
| 13–17 years 11 months |
|
| 18+ years |
|
5.Results
Not all the clinical questions could be answered using peer-reviewed literature. Where literature was lacking, the working group came to a consensus based on expertise and/or literature from other populations. A summary of the recommendations is provided here across broad age categories: infant (0–11 months), childhood (1–12 years), adolescence (13–17 years) and adulthood (18+ years). Many of the recommendations are similar across the age-ranges (e.g. exploring people’s concerns about weight and nutrition) and will need tailoring to the age and ability of the person with spina bifida being seen. Table 2 provides detailed recommendations across more specific age-ranges.
Table 2
Guidelines for nutrition, metabolic syndrome and obesity
| Age group | Guidelines | Evidence |
| 0–11 months |
| Clinical consensus as well as [5, 40, 41, 60–66] |
| 1–2 years 11 months |
| Clinical consensus as well as [2, 3, 6, 8, 12, 15, 41–43, 60, 67–77] |
|
Table 2, continued | ||
|---|---|---|
| Age group | Guidelines | Evidence |
|
| ||
| 3–5 years 11 months |
| Clinical consensus as well as [2, 8, 9, 12, 17, 19, 42, 43, 46, 67, 68, 72, 76, 77] |
|
Table 2, continued | ||
|---|---|---|
| Age group | Guidelines | Evidence |
|
| ||
| 6–12 years 11 months |
| Clinical consensus as well as [2, 6, 8, 12, 44–46, 67–69, 73, 75, 76, 77–84] |
|
Table 2, continued | ||
|---|---|---|
| Age group | Guidelines | Evidence |
|
| ||
|
Table 2, continued | ||
|---|---|---|
| Age group | Guidelines | Evidence |
| 13–17 years 11 months |
| Clinical consensus as well as [3, 8, 12, 42, 43, 46–48, 67, 68, 74, 76, 77, 78, 81, 85–9] |
|
Table 2, continued | ||
|---|---|---|
| Age group | Guidelines | Evidence |
|
| ||
| 18 + years |
| Clinical consensus as well as [2, 46, 49–51, 81, 91–95] |
|
Table 2, continued | ||
|---|---|---|
| Age group | Guidelines | Evidence |
|
| ||
5.1Infancy (0–11 months)
The initial goal for infants is to ensure that their nutritional needs are met while they are undergoing surgery for neural defect repair, shunt placement or any other medical interventions. The mother should be encouraged and supported to breastfeed if possible [40], which may include accessing breastmilk banks and/or using specialist pillows, nipples etc. [5]. A referral to a lactation consultant should be made if mothers continue to experience challenges, especially if the baby has severe Chiari malformation. Babies’ weight should be carefully tracked to assess for failure to thrive.
5.2Childhood (1–12 years)
Children should be monitored annually for weight and height or arm span [41]. While calculating BMI is included in the guidelines, it should be recognized that BMI is an imperfect indicator of body composition in children, especially those with spina bifida [42] (see more detail below).
The majority of recommendations across the childhood age-span focus on establishing and maintaining healthy feeding and nutrition practices. Parents should be provided with regular opportunities to discuss any concerns about their child’s weight, growth and/or eating behaviors [43]. It is important to talk non-judgmentally with parents about nutrition in terms of their child’s health and growth and how the early establishment of healthy eating habits can have long-terms health benefits for the child and their family. This early guidance should highlight the balance between providing healthy options and not overly restricting certain foods (especially those thought of ‘treats’) [21]. As the child ages, parents can be encouraged to include them in food planning, shopping and preparation, as well as encouraging them to make choices, such as choosing a new healthy food [44]. Involving children in making choices can lead to increased independence and interest in their foods [45]. Appropriate fluid and fibre guidelines should also be provided according to the child’s age (see Table 2).
However, while discussing ideal feeding practices, it should be recognized that food insecurity can greatly affect the family’s access to nutritious food [2]. Furthermore, it should be acknowledged that children with Chiari malformation may have sensitivity to different food textures that limit their diet [6]. Developing a trusting therapeutic relationship can greatly facilitate honest and open discussions around these topics [8].
When plotting a child’s weight and height on a growth chart, it is important that growth cut-offs developed for typically developing children are not used as comparators [2]. A steeply increasing trajectory in the child’s growth may warrant proactive discussions of possible obesity prevention strategies. Assessing height and/or length in children with spina bifida accurately can be challenging, which can bias BMI. Additional measures such as waist circumference should therefore be considered to augment other clinical information [46]. Recommendations for diabetes and dyslipidemia screening vary according to age, BMI percentile and presence of risk factors (see Table 2 for details).
5.3Adolescence (13–17 years)
Healthcare providers should provide opportunities for teens and parents to discuss any concerns with nutrition, growth, and weight. The therapeutic relationship can be strengthened by identifying adolescents’ priorities and goals and having strengths-based conversations that highlight their successes [8, 47]. Adolescents should be encouraged to learn about nutrition and how to prepare healthy food. However, the impact of low income and food insecurity on nutrition should be recognized, especially if the adolescent is living independently [48].
In addition to regular growth monitoring, annual assessment of blood pressure is recommended to monitor for pre-hypertension or hypertension. Screening for dyslipidemia and diabetes should be conducted if the adolescent meets the criteria (see Table 2 for details). Fluid and fibre guidelines should continue to be provided.
5.4Adulthood (18 years +)
Annual anthropometric monitoring continues to be important with the same caveat that BMI is largely inaccurate for people with paralysis [49]. Blood pressure should be assessed annually. In addition, screening for dyslipidemia should be conducted for all men
It is important to tailor conversations about nutrition and weight-management to the adult’s context, which includes their access to healthy food, as well as food preparation and cooking facilities. Referral to a social worker or disability organizations may be appropriate to secure additional support. Also, possible interactions of certain food with medications should be discussed [51].
6.Discussion
The guidelines presented here on nutrition, metabolic syndrome and obesity were a new addition to the Spina Bifida Association’s 2018 guidelines [7] as they were not previously part of the 2006 guidelines [38]. This guideline helps to address the nutritional needs of people with spina bifida to maximize wellness across their lifespan. Preventing conditions associated with poor nutrition –including overweight, obesity and metabolic syndrome– is also important to promote life-long health. However, through the process of creating these guidelines, we identified several gaps in the current evidence base that should be targeted in future research.
First, an evidence-based algorithm to determine the energy needs of people with spina bifida across their lifespan would be a critical tool to assist with nutritional intake and weight management. To be most useful in clinical practice, this algorithm would need to consider the heterogeneity of people with spina bifida, including their lesion level and mobility functioning.
Second, despite people with spina bifida being at a higher risk of developing obesity [3], there are currently no evidence-based guidelines for weight-management, obesity prevention, or obesity treatment specific to children and adults with spina bifida. This is a critical gap, because guidelines created for the general population [52, 53] do not take into consideration factors that may present greater challenges for this population, such as altered body composition and metabolism, and sedentary lifestyles [19, 26]. Other biopsychosocial factors can also uniquely impact nutritional intake, such as differences in tolerating certain tastes and textures, concerns around continence and unequal access to fresh food and preparatory methods [3, 54].
However, focusing solely on weight-loss is not recommended, as it may encourage disordered eating [34]. This aligns with the guidelines’ primary objective “to maximize and support wellness through the lifespan.” Therefore, it is recommended that healthcare providers focus on the broader benefits of good nutrition and physical activity in discussions with people with spina bifida. As always, these discussions should be tailored to the needs and circumstances of the individual and their families. Practical tools to enable supportive conversations have been requested by healthcare providers, patients and families alike [8]. In response to this, the ‘Fostering Positive Weight-related Conversations Casebook’ was recently developed that provides guidance specific to discussing weight-related issues in a spina bifida context (readers are directed to www.hollandbloorview.ca/conversationcasebook). However, further work is needed to identify the most effective strategies for implementing resources such as the Casebook into clinical practice [55, 56].
Third, while metabolic syndrome is considered a concern in people with spina bifida [36, 37], there are no comprehensive, high quality data to understand the risk profile of children and adults with spina bifida or guide clinical decision-making around screening protocols. Understanding the role of weight management interventions (if any) in preventing or managing metabolic syndrome is also needed.
Fourth, weight monitoring would be more informative if spina bifida-specific growth curves and weight classification cut-offs were developed. These would greatly assist in monitoring and managing children and adults’ weight, rather than using norms developed for people without disabilities. In the absence of any spina bifida-specific growth norms, this guideline refers to BMI. However, healthcare providers are urged to remember that BMI is an inaccurate indicator of health generally [28] and especially in those with spina bifida [19]. Rather than focusing on a single measurement, monitoring trajectories over multiple time-points can provide more useful information about a person’s growth and/or weight [2, 28].
Finally, the supplemental file accompanying this article provides instruction on standardized assessments of BMI and body composition, such as waist circumference and skinfold thickness. Although these assessments have shown good correlations with fat mass measured by dual-energy X-ray absorptiometry [57, 58], their accuracy is still dependent upon assessor skill [59]. Assessing body composition in an accurate and accessible manner is still extremely challenging, given that most clinical settings do not have access to specialized equipment.
7.Conclusion
The Nutrition, Metabolic Syndrome and Obesity Guidelines described here were created to maximize and support wellness for all people with spina bifida across their lifespan. While some recommendations are specific and technical, others are less exact due to a lack of evidence for this population. However, our objectives were deliberately aspirational. The working group believes that the recommendations here will help promote better health and wellness in people with spina bifida of all ages.
Acknowledgments
This edition of the Journal of Pediatric Rehabilitation Medicine includes manuscripts based on the most recent “Guidelines For the Care of People with Spina Bifida,” developed by the Spina Bifida Association. Thank you to the Spina Bifida Association for allowing the guidelines to be published in this forum and making them Open Access.
The Spina Bifida Association has already embarked on a systematic process for reviewing and updating the guidelines. Future guidelines updates will be made available as they are completed.
Executive Committee
• Timothy J. Brei, MD, Spina Bifida Association Medical Director; Developmental Pediatrician, Professor, Seattle Children’s Hospital
• Sara Struwe, MPA, Spina Bifida Association President & Chief Executive Officer
• Patricia Beierwaltes, DPN, CPNP, Guideline Steering Committee Co-Chair; Assistant Professor, Nursing, Minnesota State University, Mankato
• Brad E. Dicianno, MD, Guideline Steering Committee Co-Chair; Associate Medical Director and Chair of Spina Bifida Association’s Professional Advisory Council; Associate Professor, Department of Physical Medicine and Rehabilitation, University of Pittsburgh School of Medicine
• Nienke Dosa MD, MPH, Guideline Steering Committee Co-Chair; Upstate Foundation Professor of Child Health Policy; SUNY Upstate Medical University
• Lisa Raman, RN, MScANP, MEd, former Spina Bifida Association Director, Patient and Clinical Services
• Jerome B. Chelliah, MD, MPH, Johns Hopkins Bloomberg School of Public Health
Additional acknowledgements
• Julie Bolen, PhD, MPH, Lead Health Scientist, Rare Disorders Health Outcomes Team, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention
• Adrienne Herron, PhD Behavioral Scientist, Intervention Research Team, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, Centers for Disease Control and Prevention
• Judy Thibadeau, RN, MN, Spina Bifida Association Director, Research and Services; former Health Scientist, National Spina Bifida Program, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention
Funding
The development of these Guidelines was supported in part by Cooperative Agreement UO1DD001077, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official view of the Centers for Disease Control and Prevention or the Department of Health and Human Services.
Conflict of interest
The authors have no conflicts to declare.
Supplementary data
The supplementary files are available to download from http://dx.doi.org/10.3233/PRM-200753.
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