Introduction
The Need to Treat Obesity in Individuals with Down Syndrome
In the United States approximately 17% of children and adolescents are considered to be obese while the prevalence of obesity in adults is around 40%.[1][2] Children with Down syndrome have a higher likelihood of being overweight or obese when compared to those without Down syndrome.[3] In addition, youth and adults with Down syndrome are more likely to be overweight or obese compared to individuals with other intellectual disabilities.[4] Obesity negatively impacts individuals’ quality of life and increases the risk for chronic disease. Individuals with Down syndrome experience the same risk factors for overweight and obesity as the general population including low physical activity, low consumption of fruits and vegetables, low fiber intake, and low protein intake. Individuals with Down syndrome may also have additional risk factors including poor appetite control, hypotonia, hypothyroidism, and other comorbid conditions.[3]
Clinicians who care for individuals with Down syndrome are often hesitant to treat obesity. That hesitation likely stems from less experience in treating those with Down syndrome and a genuine desire to do no harm. However, the risks of untreated obesity in this population are significant. Obesity in individuals with Down syndrome has been associated with risk of obstructive sleep apnea (OSA), dyslipidemia, hyperinsulinemia, and gait dysfunction,[3][5] as well as lower cardiorespiratory fitness.[6] Although treatment of OSA with hypoglossal nerve stimulators like Inspire® is approved for individuals with Down syndrome, this is often restricted by Body Mass Index (BMI) levels.
Adults with Down syndrome and OSA have more cerebral vascular disease and a higher amyloid burden suggestive of dementia.[7] Additionally, the adjusted odds ratio for someone with Down syndrome dying from dementia is 24.8 compared to the general population.[8] A recent meta-analysis showed 45% of all causes of dementia are modifiable risk factors and include weight management and physical activity.[9] While it is not known if these risk reduction measures would apply in Down syndrome, they are still generally recommended.
Obesity is a complicated and chronic disease often requiring multimodal and persistent treatment. The first step is recommending exercise, dietary changes and behavior modification. If lifestyle changes alone do not produce the desired results, medication and/or bariatric surgery should be pursued. However, it should be noted that in individuals without Down syndrome, even modest changes such as 3-5% weight loss can significantly improve health outcomes. Individuals with Down syndrome may have obesity that is even more challenging to treat, not only because of intellectual differences but due to metabolic differences including leptin resistance and decreased muscle mass (see below). However, not treating obesity can lead to other health risks. More research will be critical to finding the optimal treatment for this population and to offer reassurance of safety and efficacy to their treatment teams.
The Importance of an Integrated Approach
There is a misconception in both the lay public and the medical community about how weight is gained and lost. The overriding view of weight being purely a formula (“calories in versus calories out”) fails to capture the complexity of the human body and may contribute to the bias against those affected by obesity. In reality, weight is determined not only by calories consumed and calories burnt, but also by genetics, environment, types of food consumed, hormones, health conditions, medications taken, and multiple other factors.[10] This complexity is important when understanding how to initiate and support treatment of obesity in individuals with Down syndrome. Treatment approaches in the general population stress the importance of an integrated approach including dietary changes, physical activity and exercise, and behavioral change strategies.[11][12] If these do not elicit the desired weight loss, then pharmacological and/or surgical interventions can be considered. The following sections discuss specific considerations and recommendations for each of these components when working with individuals with Down syndrome and their families.
Nutrition
This section will provide an overview of nutrition-related factors that contribute to weight gain in individuals with Down syndrome, nutrition recommendations for managing overweight and obesity, and strategies to implement these recommendations while considering common comorbidities impacting nutrition status.
Overview of Nutrition Recommendations to Support Weight Loss
The traditional approach to weight loss involves reducing caloric intake by 500-750 calories/ day and adjusting daily calories from added sugars and saturated fats to <10% of daily calories each.[11][12] While effective for those without Down syndrome, these interventions may become barriers for individuals with Down syndrome. Counting calories, reading nutrition labels, and planning meals may not be effective strategies to support weight management in the Down syndrome population. Instead, one should focus on improving overall diet quality, controlling portions, and promoting self-advocacy skills. When setting goals to support weight loss, the individual with Down syndrome should be involved in the discussion in order to promote self-ownership of lifestyle changes. Afterwards, the dietary changes should be completed by the individual as independently as ability allows.
There is evidence that an enhanced Stoplight eating plan in combination with self-monitoring promotes weight loss in adolescents and adults with Down syndrome. The traditional Stoplight diet approach encourages unlimited consumption of low energy-density “green” foods and avoiding or limiting consumption of high energy-density “red” foods.[13][14] The enhanced Stoplight diet approach recommends individuals consume two portion-controlled entrees, two portion-controlled meal replacement shakes, and at least five 1-cup servings of fruits and vegetables per day. Individuals can also include meals and snacks from the Stoplight green and yellow categories.[15][16] Nutrition recommendations should encourage including a variety of fruits, vegetables, whole grains, and high-quality proteins while limiting highly-processed foods, added sugars, and sugar-sweetened beverages.[17][18]
When combined with nutrition education, the involvement of family and caregivers has been shown to improve weight loss in individuals with Down syndrome.[19] Family and caregivers can provide encouragement for individuals to reach the lifestyle goals set with the medical team. Caregivers can reinforce these goals by modeling the desired behaviors and assisting the individual with tasks unable to be completed independently. By participating in behavior change, families and caregivers can further support their loved one with Down syndrome without making them feel singled out or as though they are being punished. It is important to note that strict monitoring of caloric intake and weight by a parent or caregiver can decrease an individual’s self-ownership of their lifestyle changes. This can lead to the person developing a dysfunctional relationship with food that exacerbates weight-related issues or encourages disordered eating behaviors. Clinicians can support individuals with Down syndrome and their caregivers by giving positive feedback as they make healthier eating choices.
The availability of high-calorie, low nutrient-density foods at social functions can be a challenging situation to navigate for individuals working towards weight loss goals. Many social events may be centered around food and may not encourage healthy nutrition choices. As individuals with Down syndrome enter adulthood, opportunities for social engagement and community involvement may become restricted. Recommending that individuals limit the frequency of meals outside the home or avoid social events where healthy food options are not available can further reduce an individual’s opportunities to engage with their community. Instead, providing strategies for making healthier choices when dining out and at social engagements can be more effective. Key points of nutrition education include packaging half of one’s meal in a to-go box when dining out, opting for zero-calorie beverages, limiting fried foods, and selecting fruits or vegetables as a side dish.
Increasing Effectiveness of Nutrition Education
It is essential to identify an individual’s interest areas and the motivating factors that align with their lifestyle goals. Parents, caregivers, medical professionals, and individuals with Down syndrome may have different reasons for prioritizing weight loss. For example, healthcare professionals may prioritize risk reduction, whereas individuals may be more motivated to increase their independence, ability to work or attend school, and participation in social activities. Using open-ended questions and motivational interviewing techniques further encourages self-advocacy and ownership of behavior change. Encouraging autonomy through choice can increase the effectiveness of nutrition education and dietary modifications. For many individuals with Down syndrome, food choices are one of the only areas where they have some control. For example, “Do you want blueberries or apples with your dinner?” or “Do you want a cheese stick or yogurt for a snack today?” Taking away this control can create additional issues. When individuals better understand the value of maintaining a healthy weight, they will be more motivated to implement lifestyle changes.21 Using visual aids, social stories, and checklists or calendars for nutrition education and self-monitoring can help to provide reminders and set realistic expectations.[18][22]
For adults with Down Syndrome , the U.S. Preventive Services Task Force (USPSTF) recommends a high-intensity weight loss program that includes at least 14 counseling sessions and is administered for at least 6 months.[23] For youth, USPSTF recommends a multidisciplinary approach consisting of >26 contact-hours of intensive behavioral intervention. Individuals must assume responsibility for lifestyle changes that support sustainable weight loss.[24] The ultimate goal is to promote independence and self-advocacy while prioritizing overall health and wellness.
Comorbidities seen in Down Syndrome and Potential Impact on Dietary Recommendations
Celiac disease: Individuals with Down syndrome are at an increased risk of developing celiac disease. Compared to a general prevalence of about 1%, the prevalence of celiac disease in individuals with Down syndrome is estimated to be 5-15%.[25] Celiac disease is a chronic autoimmune condition triggered by the ingestion of gluten resulting in damage to the intestinal lining. Gluten is a protein found in certain grains, such as wheat, barley, and rye, that can be found in many foods. Common side effects of celiac disease include constipation, diarrhea, bloating, abdominal pain, irritability, behavior issues, fatigue, and unexplained weight loss. Medical nutrition therapy for celiac disease entails lifelong strict avoidance of gluten-containing foods and products.
Unfortunately, a gluten-free diet can contribute to weight gain. A 2012 study investigated weight changes after gluten-free diet initiation and found that 21.8% of patients with normal or high BMI at study entry increased their BMI by more than two points.[26] While following a gluten-free diet, 15.8% of patients moved from a normal or low BMI class into an overweight BMI class, and 22% of patients overweight at diagnosis gained weight.[26] This weight gain may be related to the healing of the intestinal lining, which improves nutrient absorption, and a decrease in GI discomfort, which increases appetite.[23] It may also be related to increased consumption of high-calorie, ultra-processed gluten-free alternatives to common wheat-based products, such as breads, donuts, pasta, and baked goods. To maintain a healthy weight while following a gluten-free diet, experts recommend that individuals increase their intake of naturally gluten-free whole foods such as fruits and vegetables and include high-fiber gluten-free carbohydrate sources such as quinoa, brown rice, or legume-based pasta products. Improving diet quality while remaining gluten-free can support weight loss while prioritizing management of celiac disease.
Selective eating habits: Selective eating habits are more common in children with intellectual disabilities.[27] These habits can be influenced by many factors including autism-spectrum disorder, dysphagia, intubation trauma, and oral-motor delays.[28][29] Food selectivity can be seen in individuals with Down syndrome and may be more prevalent in patients with a concomitant diagnosis of autism spectrum disorder. Selective eating may include, but is not limited to, preference for foods of specific colors or textures, diets consisting of less than <10-15 foods, or diets consisting of foods from only 1 or 2 food groups. To address selective eating, the goal is to add diet variety by introducing new foods gradually. When treating children and adolescents, family-based behavioral therapy may also be beneficial.[30]
Individuals who are overweight or obese can still be undernourished, especially in patients with selective eating habits, so it is important to evaluate micronutrient deficiencies and address them with medical nutrition therapy and nutrient supplementation if indicated. If signs or symptoms of deficiency are seen on exam, additional screening or testing for micronutrients of concern including vitamin B12, iron, vitamin D, and calcium may be beneficial.
Obstructive sleep apnea: Obstructive sleep apnea (OSA) is commonly seen in individuals with Down syndrome. This is possibly related to the hypotonia and obesity also seen in this group, as well as their lower tolerance for conventional therapies to treat OSA.[31] Individuals with Down syndrome may thus experience extreme fatigue, exhaustion, frequent napping, irritability, and behavior issues which can negatively impact weight management. Poor sleep hygiene may also increase late-night eating and binge-eating.[32] A recent cross-sectional study showed that patients with OSA are more likely to consume a large amount of carbohydrates including sugar-sweetened beverages, fried foods, and dairy products.[33] Although this type of study cannot establish causality, when OSA and poor diet do co-occur it makes sense to treat both conditions to reduce complications and improve quality of life. Medical nutrition therapy should include nutrition counseling to encourage a balanced diet with focus on moderation and mindful eating habits. The interdisciplinary team can also encourage good sleep hygiene by implementing visual schedules and a consistent bedtime routine.
Cardiovascular complications: Individuals with Down syndrome are at increased risk for certain cardiovascular complications, as heart defects occur in approximately 50% of live-born infants with this condition.[34] While there are no specific nutrition recommendations for complications of congenital heart disease, a varied diet with emphasis on whole foods and moderate portions can support weight management and overall health. It is important to keep in mind that many individuals with Down syndrome may have restrictions on exercise, so consulting with a cardiologist can be beneficial.
Physical Activity and Exercise
This section will provide an overview of how physical activity and exercise can contribute to weight management, why these interventions are especially important for someone who has Down syndrome, and how to create a successful experience for all.
General Guidelines for Physical Activity and Exercise in Weight Management
Both the Adult Weight Management Guidelines (AHA/ACC/TOC)[35] and the Guidelines for Weight Management for Children and Adolescents (AAP 2023)[36] stress the importance of combining a physical activity/exercise component with dietary and behavioral interventions. For adults, the recommendation is at least 150 minutes of moderate to vigorous physical activity per week. To support a modest weight loss of 2-3 kg, the American College of Sports Medicine recommends >150 min/week, or up to 225-420 min/week for even greater weight loss (5-7.5 kg).[37] For children and adolescents, the AAP recommends at least 60 min/day, or 300 min/week to support weight loss.[36]
Activity Levels and Limitations in Individuals with Down Syndrome
Several studies have shown that most individuals with Down syndrome (43%-100%) are less active than recommended by physical activity guidelines.[38][39][40][41][42] This higher prevalence of low activity levels worsens as individuals with Down syndrome age.[43] In addition, participation in exercise (which is a planned, structured, and purposeful type of activity that aims at improving physical fitness) is even lower. Studies have repeatedly shown very low aerobic capacity in individuals with Down syndrome.[44][45] This is, however, not explained by reduced physical activity and exercise levels alone. Autonomic dysfunction in individuals with Down syndrome is responsible for a lower heart rate, misregulation of blood pressure, and altered blood flow distribution, all of which impact the ability to exercise.
In general, any exercise may be more strenuous for an individual with Down syndrome, so it is critical to avoid using heart-rate formulas intended for the general population (such as 220-age). To calculate theoretical maximal heart rate (MHR) for adults with Down syndrome, the formula MHR = 179-(0.56*age) is preferred.[46] This formula is based on hundreds of maximal exercise tests in adults with Down syndrome, and results in a lower, more valid estimation of maximal heart rate and the target heart-rate zone.[47] Other highly prevalent factors that can or may make physical activity more challenging in individuals with Down syndrome are ligamentous laxity, muscle weakness, impaired motor control, impaired balance, flat feet, hypothyroidism, and the residual effects of congenital heart issues.[48] Importantly, if there is a history of congenital heart defects or other cardiovascular concerns, discussion with a cardiologist is advised to make sure the individual is cleared for exercise.
Physical activity makes up about 10% of total daily energy expenditure, whereas 70% is expended on metabolism and the remaining 20% is involved in thermoregulation. Although physical activity changes can contribute to a slightly higher daily energy expenditure, the greatest effect of exercise is through increased muscle mass, which then increases the resting metabolic rate throughout the day. Data are mixed regarding a lower resting metabolic rate in adults with Down syndrome, as some studies found a lower rate in both children[49][50] and adults with Down syndrome,[51] whereas other studies did not,[52] or found no relationship between resting metabolic rate and weight gain over a 3-year period.[49] Whether their baseline rate is lower or not, individuals with Down syndrome are fully capable of changing this rate by increasing muscle mass. Multiple systematic reviews have demonstrated that exercise programs for individuals with Down syndrome promote weight loss, change body composition, and increase muscle mass and strength.[53][54] Furthermore, regular physical activity and exercise are critical to prevent weight regain after weight loss.
Regardless of the effect on their body weight, individuals with Down syndrome can benefit from increasing physical activities and exercise. Systematic reviews have shown that exercise increases muscle mass, stability, and strength,[54][55] which are critical given the high prevalence of ligamentous laxity in individuals with Down syndrome. Additionally, exercise promotes improvements in balance[55], proprioception, postural stability, and aerobic capacity,[53][56] which are also important considering the high prevalence of both sensory impairments impacting balance and low aerobic fitness levels. Lastly, exercise has been shown to improve motor skills, daily life activities, community participation[57], attitudes toward exercise, and quality of life.[58]
How to Create a Successful Exercise Program
Although the effects of physical activity and exercise are positive for both physical and mental health, the journey towards that involves behavioral change, which can be challenging for everyone. Based on important contributions by McGuire & Chicoine[59] and Stein,[60] it is critical to adapt any program to the unique learning styles and cognitive abilities of individuals with Down syndrome, and to the specific individual. The most successful programs create fun experiences, celebrate the intensity of work performed, provide a structured routine supported by visual charts, and give positive feedback.[59][60] A gradual progression of intensity, duration and complexity fosters confidence and mastery, which is important for creating an empowering experience. A little improvement is better than none, and small changes lead to big changes over time.
For all exercise and physical activity, it is important to wear supportive shoes and provide a range of different exercises that are age-appropriate and incorporate different fitness components. Aerobic endurance can be improved by walking, biking, or elliptical training at an appropriate level of intensity based on the Down syndrome-specific heart rate calculation. Strength training and bodyweight exercises improve posture, hip stability, and knee stability. Balance can be improved by visual-vestibular coordination exercises, practicing activities on varied surfaces, and choosing activities that include rhythm and increased sensory input, such as dancing and swimming.
Many practical and free exercise programs are offered for individuals with Down syndrome. The Special Olympics, a nationwide charitable organization, offers many local chapters, etc. Another nonprofit, GiGi’s Playhouse, runs over 200 in-person Down Syndrome Achievement Centers, plus a free online exercise program (“GiGiFit“) suitable for four different age categories. Finally, the National Down Syndrome Society offers the 321go!® wellness program, which aims promote healthy lifestyle choices in physical activity, balanced nutrition, and emotional wellness among individuals with Down syndrome and their families.
Anti-Obesity Medication and Surgical Procedures
This section introduces the two main hormones involved in weight regulation, followed by an overview of the most common medications and surgical procedures used by obesity- trained physicians and clinicians. By the end of this section, we review current guidelines for pharmacological and surgical treatment of overweight individuals with Down syndrome.
Hormones Involved in Weight Regulation
The main hunger hormone in the body is ghrelin. Ghrelin is primarily produced in the stomach and small intestine.[61][62] Its role in weight control goes beyond stimulating appetite, as it also conserves energy in times of food restriction and promotes lipogenesis (fat storage).[63][64][65] Ghrelin stimulates the production of neuropeptide-Y (NPY) and Agouti-Related Protein (AgRP)[66] both of which may be inhibited by anti-obesity medications.
The body’s main satiety hormone is leptin. Leptin is primarily produced in adipose cells.[67] When leptin levels rise, it signals the brain that energy stores are sufficient, releasing fat for fatty acid oxidation and increasing energy expenditure.[68][69] Leptin stimulates the production of POMC (proopiomelanocortin) and CART (cocaine- and amphetamine-regulated transcript protein) that are also the targets of weight-loss pharmaceuticals.[70]
In summary, ghrelin stimulates appetite and signals the body to store fat and decrease energy expenditure. Leptin promotes satiety and signals the body to let go of fat stores and increase energy expenditure.
In theory, this system should allow a consistent energy balance where humans store fat when needed and let go of it when enough is stored. Unfortunately, this balance can be disrupted by leptin resistance (often reflected by a high leptin level), insulin resistance, biochemical changes due to long-term obesity, and multiple other genetic and environmental forces. From a metabolic standpoint, individuals with Down syndrome face additional challenges in weight loss due to leptin resistance. A study found that individuals with Down syndrome had higher leptin levels and higher body fat percentages compared to their unaffected siblings.[71] In another study, 2- to 12-year-olds with Down syndrome had higher leptin resistance than their age-matched peers without Down syndrome.[72]
Anti-Obesity Medications
Medications commonly prescribed for obesity are listed in Table 1. Some are FDA-approved for the treatment of obesity, but others are used off-label. Most affect the main hormonal pathways already described, with associated effects on appetite and fat reserves. Many of them can be used together, such as metformin and topiramate. Anecdotally, this author has seen positive results with phentermine, or phentermine plus topiramate in individuals with Down syndrome. Unfortunately, there are no published studies to show the long-term effectiveness of these different medications in this specialized population.
When prescribing medication, addressing two concerns with the same drug is always the preferred approach. For example, metformin can promote weight loss and also treat polycystic ovarian syndrome (PCOS). Starting slowly, layering medication, and following up frequently are essential.
Many doctors prescribe GLP-1 RAs (glucagon-like peptide-1 receptor agonists) for weight loss. In this clinician’s experience, seeing a patient monthly for the first 6 months after starting this medication is critical for managing medication side effects and ensuring that the patient is eating well. This is because GLP-1 RAs can cause a dramatic decrease in appetite, leading to a loss of muscle mass or a nutritional deficiency. If the primary professional prefers not to manage anti-obesity medications, a referral to an endocrinologist or weight-loss specialist is appropriate. A list of professionals trained in obesity management is available here. As with most medical treatments, medication alone without lifestyle changes typically gives disappointing results.
Table 1: Medications used for obesity treatment
| Medication Name | General Information | Mechanism | Side Effects | Crushability | References |
|---|---|---|---|---|---|
| Metformin | Few contraindications; useful for T2DM, insulin resistance, PCOS, hidradenitis suppurativa; safe in glaucoma | Inhibits NPY and AgRP; increases leptin sensitivity | GI upset | BID form is crushable | Lv WS, Wen JP, Li L, et al. The effect of metformin on food intake and its potential role in hypothalamic regulation in obese diabetic rats. Brain Res. 2012;1444:11-19. doi:10.1016/j.brainres.2012.01.028 Kim YW, Kim JY, Park YH, et al. Metformin restores leptin sensitivity in high-fat-fed obese rats with leptin resistance. Diabetes. 2006;55(3):716-724. doi:10.2337/diabetes.55.03.06.db05-0917 |
| Topiramate | Changes taste profile; adjuvant for seizures/migraines; some use for binge eating | Inhibits NPY; stimulates POMC | Brain fog, paresthesia, rare visual changes, birth defects, renal stones; avoid with renal stones, glaucoma, pregnancy risk | Crushable as BID dose; sprinkles form available | Alkan I, Altunkaynak BZ, Altun G, Erener E. The investigation of the effects of topiramate on the hypothalamic levels of fat mass/obesity-associated protein and neuropeptide Y in obese female rats. Nutr Neurosci. 2019;22(4):243-252. doi:10.1080/1028415X.2017.1374033 Caricilli AM, Penteado E, de Abreu LL, et al. Topiramate treatment improves hypothalamic insulin and leptin signaling and action and reduces obesity in mice. Endocrinology. 2012;153(9):4401-4411. doi:10.1210/en.2012-1272 Genc BO, Dogan EA, Dogan U, Genc E. Anthropometric indexes, insulin resistance, and serum leptin and lipid levels in women with cryptogenic epilepsy receiving topiramate treatment. J Clin Neurosci. 2010;17(10):1256-1259. doi:10.1016/j.jocn.2010.01.045 |
| Bupropion + Naltrexone | Helpful for stress eating; used for depression | Stimulates POMC | Nausea, headaches, increased BP; avoid in seizure history, uncontrolled BP, glaucoma, or opioid use; monitor mental health | Bupropion cannot be crushed; naltrexone can be compounded | Greenway FL, Whitehouse MJ, Guttadauria M, et al. Rational design of a combination medication for the treatment of obesity. Obesity (Silver Spring). 2009;17(1):30-39. doi:10.1038/oby.2008.461 |
| GLP-1 RA (e.g., liraglutide, semaglutide, tirzepitide) | Effective for weight loss; slows digestion; changes taste preference; treats type 2 diabetes | Inhibits NPY and AgRP; stimulates POMC and CART; liraglutide reverses leptin sensitivity | GI side effects, bowel obstruction, pancreatitis; expensive, limited insurance coverage | Injectable, oral version not crushable | He Z, Gao Y, Lieu L, et al. Direct and indirect effects of liraglutide on hypothalamic POMC and NPY/AgRP neurons – Implications for energy balance and glucose control. Mol Metab. 2019;28:120-134. doi:10.1016/j.molmet.2019.07.008 Knudsen LB, Secher A, Hecksher-Sørensen J, Pyke C. Long-acting glucagon-like peptide-1 receptor agonists have direct access to and effects on pro-opiomelanocortin/cocaine- and amphetamine-stimulated transcript neurons in the mouse hypothalamus. J Diabetes Investig. 2016;7 Suppl 1(Suppl 1):56-63. doi:10.1111/jdi.1246 18 Seo S, Ju S, Chung H, Lee D, Park S. Acute effects of glucagon-like peptide-1 on hypothalamic neuropeptide and AMP activated kinase expression in fasted rats. Endocr J. 2008;55(5):867-874. doi:10.1507/endocrj.k08e-091 |
| Phentermine | Works as a stimulant with no evidence it affects the hunger pathway described | Does not increase Basal Metabolic Rate | May disrupt sleep; avoid in cardiac diseases, uncontrolled hypertension, glaucoma | Pills can be split but not crushed | Alexander M, Rothman RB, Baumann MH, Endres CJ, Brasić JR, Wong DF. Noradrenergic and dopaminergic effects of (+)-amphetamine-like stimulants in the baboon Papio anubis. Synapse. 2005;56(2):94-99. doi:10.1002/syn.20126 |
Bariatric surgery
For the general population, bariatric surgery is considered the gold standard in treating obesity. In a meta-analysis reviewing outcomes for 174,722 participants, non-diabetic individuals who underwent bariatric surgery had an average increase in life expectancy of 6.1 years over those who had usual care.[73] For diabetic individuals, bariatric surgery was associated with an average 9.3 year increased expected life span.[73] There seems to be little difference in outcomes between laparoscopic sleeve gastrectomy (LSG) and laparoscopic Roux-en-Y gastric bypass (LRYGB), which are the two bariatric surgeries offered in the United States. Both are effective for promoting mid-term weight loss and reducing type 2 diabetes, hypertension, hyperlipidemia, sleep apnea, and hypertriglyceridemia.[74]
Although bariatric surgery can offer significant weight loss benefits for the general population, it is essential to consider the unique health needs and potential challenges faced by individuals with Down syndrome. Critical issues include anatomical restrictions (such as a smaller airway), the capacity to consent, and the ability to comply with the requirements of surgical preparation and recovery.
There are few published accounts of bariatric surgery in those with Down syndrome. One published account reported on a 28-year-old male with Down syndrome who underwent a Roux-en-Y gastric bypass.[75] His starting BMI was 41.5, whereas after the procedure it decreased to 26.7, representing a 90% loss of excess weight. (Excess weight loss is generally defined in bariatric surgery as the amount of weight loss divided by an individual’s pre-surgery weight less their ideal weight expressed as a percent). His hypertension also resolved.
Researchers compared eight adolescents with intellectual disabilities (three with Down syndrome and five with mild to severe intellectual disability of other origins) to their typically developing peers after LSG.[76] In this study, neither extremely low IQ nor a diagnosis of developmental disability impacted weight loss in the short term (12 months). The authors go on to suggest that adolescence may be an optimal time to consider bariatric surgery for those with obesity, as those individuals may have more support in place than adults.76
One study looked at children and youth with neurotypical differences (n=34), four of whom had Down syndrome.[77] There were no differences in weight loss metrics at 6, 9, or 12 months compared to their typical-developing peers. These authors suggest that more supports may be needed to accommodate sensory differences and to make surgery less stressful. Finally, the authors advise against adding barriers to bariatric surgery, such as requiring cases to be presented to ethics committees.[77][78]
In a 2005 survey of bariatric surgical practices, 81.6% of programs considered severe intellectual disability (an IQ < 50) to be a definite contraindication and 13.6% considered it a possible contraindication to surgery.[79] However, in 2018, the American Society for Metabolic and Bariatric Surgery recommended that intellectual disability should not be a contraindication for bariatric surgery.[80]
The best practice for those with special needs is to have ready access to multiple specialists prior to surgery. For example, Occupational Therapy could work on expanding taste preference to improve nutrition in those with limited diets. In 2024, this author interviewed Meredith Dryer, PhD, a psychologist at Mercy Children’s Hospital Kansas City. In the hospital’s experience of assisting many children with developmental challenges prepare for bariatrics, reviewing the individual’s skills before surgery is essential to assess the person’s ability to comply and address any challenges before the procedure.
While the idea of an individual with Down syndrome undergoing bariatric surgery may seem overwhelming, surgery should not be ruled out solely based on intellectual disability. If the surgery can be performed safely, if the person has the ability to comply with both pre- and postoperative requirements, and if the social environment is supportive, there is no reason not to consider surgery as an option when lifestyle changes and medications have not been effective.
Conclusion
Individuals with Down syndrome are at increased risk for being overweight and obese due to poor diet quality, low physical activity, poor satiety control, and other comorbid conditions. Being overweight or obese can negatively impact their physical health and increase barriers to their independence and self-reliance. By tailoring our recommendations, we can make traditional nutrition, lifestyle, and exercise modifications more accessible to patients with Down syndrome and support their weight management goals. If these modifications are ineffective, adding anti-obesity medications and/or bariatric surgery can be important interventions for individuals with Down syndrome. An interdisciplinary approach is key to addressing the persistent barriers to lasting lifestyle modifications and sustainable weight loss.