People with learning disabilities have a high risk of obesity and cardiovascular morbidity. Multidisciplinary working is vital to identify potential problems early
Asit B Biswas, FRCPsych, is consultant psychiatrist; Arshya Vahabzadeh, MRCGP, is core trainee in psychiatry; both at Leicester Frith Hospital; Tracy Hobbs, RNMH, is community learning disability nurse, Winstanley Drive Health Centre, Leicester; James M Healy, MRCGP, is GP, The Surgery, Newark, Nottinghamshire.
The prevalence of obesity is higher among people with learning disabilities compared with the general population, contributing towards health inequalities and increased risk of cardiovascular and cerebrovascular disease.
This article discusses the possible causes of this higher prevalence and examines interventions to reduce obesity and associated risks. It also highlights important considerations in adults with learning disabilities, such as assessing mental capacity to consent to specific interventions. The importance of multidisciplinary team working involving a range of professionals and specialists and ensuring a consistent approach are also stressed.
Keywords Obesity, Learning disability, Multidisciplinary
- This article has been double-blind peer reviewed
- The effectiveness of interventions to reduce obesity and associated risks is limited in people with learning disabilities for several reasons, including non cooperation and non concordance.
- Multidisciplinary team working to develop person centred planning, involving primary and acute care, learning disability services, relevant specialists and social services, is vital.
- The four key approaches to reduce obesity involve: focusing on dietary intake; increasing energy expenditure; health promotion and health education; and multifaceted approaches incorporating more than one of these.
- Effective liaison between practice nurses and community learning disability nurses is likely to help address barriers to screening, monitoring and interventions to reduce obesity in this group.
Obesity is a major health concern due to its increasing prevalence, both generally and particularly in people with learning disabilities, where its prevalence is higher than in the general population. A number of clinical guidelines including the National Institute for Health and Clinical Excellence (2006) offer practical recommendations, with a strong focus on primary care (Mercer, 2009).
The prevalence of obesity is higher among people with learning disabilities than the general population. Yamaki (2005) reported a prevalence of 35% in 1997-2000 in a sample of 3,499 people with learning disabilities living in the community in the US, while Emerson (2005) reported 27% in 1,304 residential service users with learning disabilities in England.
People with learning disabilities present particular challenges for primary care professionals, both in terms of prevention and clinical management of obesity. This group comprises an estimated 2.5% of the UK population (Whitaker, 2004). In a typical GP practice of 12,000 registered patients, 300 are likely to have a learning disability.
Michael (2008) reported several reasons for health inequalities among people with learning disabilities. Data on this group and their journeys through the general healthcare system is lacking and the available information is inadequately coordinated or poorly understood.
A variety of causes have been suggested that are likely to increase the risk of obesity in people with learning disabilities. Adolfsson et al (2008) noted that those living in the community had a relatively high proportion of calorie intake contributed by:
- Snacking between meals;
- A diet including high consumption of milk, meat and dense sugary foods;
- Low consumption of fruit, vegetables and fibre.
Lower physical activity levels have also been reported in this group (Messent et al, 1998). Limited availability of community leisure facilities, staffing shortages and transport limitations, as well as lack of clarity in day services and residential home guidelines and participant income/expenditure have been identified as barriers to increased physical activity (Messent et al, 1999).
Bhaumik et al (2008) also proposed that low basal metabolic rate, hypotonia and hypothyroidism may be more prevalent factors in people with learning disabilities that may result in weight gain. In a minority of people in this group, the predisposition to obesity may be associated with the cause of learning disability and its behavioural phenotype, for example Down’s syndrome (Henderson et al, 2007).
Some 45% of hospitalised patients and 20% of people in the community with learning disabilities and mental health problems receive antipsychotic medication (Aschcroft et al, 2001). In those taking this medication, clinically significant weight gain, a range of negative cardiac and electrocardiogram changes and the risk of metabolic syndrome have been reported (Newcomer, 2005).
Baseline cardiovascular risk
Advances in medical and social care have increased the life expectancy of people with learning disabilities. It is recognised that advancing age is an important unmodifiable risk factor for cardiovascular disease, and obesity is also a significant risk factor. However, research on overall cardiovascular risk in this group is limited. Wallace and Schluter (2008) found that people with learning disabilities in an Australian sample generally had a more favourable cardiovascular risk profile compared with the general population, including lower prevalence of risk factors such as hypertension, diabetes and smoking. But obesity and low physical activity were more common in this group, with 35% of the sample identified as obese.
Weight gain and obesity is also an issue in adolescents with learning disabilities, as Wallén et al (2009) reported a higher percentage of fat mass, larger waist circumferences and greater evidence of insulin resistance among this group compared with their peers. The study also showed that having a learning disability was linked to lower cardiovascular fitness.
Hill et al (2003) studied 4,872 people with Down’s syndrome and found significantly higher rates of cardiovascular mortality compared with the general population based on standardised mortality ratios, which were 16.5 and 6.0 respectively.
Unfortunately, the few studies focusing on weight loss interventions in people with learning disabilities have tended to be methodologically weak, involving small numbers and lacking controls (Hamilton et al, 2007).
Chapman et al’s (2008) and (2005) studies involved a healthy living coordinator who designed activity programmes and dietary strategies, and identified barriers to healthier lifestyles. The researchers compared the body mass index (BMI) of the intervention group with that of the control group, and found the former group’s BMI decreased throughout the six years of follow up, while the control group had an overall increase. The small sample sizes may have contributed to an overall lack of statistical significance between the two groups. The studies were also unable to identify which elements of the multifaceted intervention worked well and for which groups of people with learning disabilities.
Hamilton et al (2007) reviewed interventions for weight loss among adults with learning disabilities and obesity. They noted four key approaches:
- Focusing on dietary intake;
- Physical approaches to increase energy expenditure;
- Health promotion and health education;
- Multifaceted approaches incorporating more than one of these interventions.
Each of these approaches showed some effectiveness in producing weight loss in the short term, although long term data on sustaining it is lacking. A literature search did not reveal any research on pharmacological or surgical interventions to reduce weight in this group.
Obesity carries many health risks, particularly in people with learning disabilities. Lower physical exertion and obesity appear to be the most prominent modifiable risk factors to reduce the risk of cardiovascular and cerebrovascular disease in this group. The emergence of differences in body fat in adolescents based on the presence of learning disability highlights the early development of these problems. However, the effectiveness of interventions to address and reduce the risks from obesity is limited in this group.
Effective multidisciplinary work tailored to the needs of the individual tends to provide some benefit if planned carefully involving the patient’s GP, practice nurse, dietitian, community learning disability nurse, speech and language therapist and psychology and psychiatry input from local learning disability services.
A well planned and organised programme including the following three components should be implemented:
- A focus on dietary intake taking into account individual food preferences;
- A personalised physical fitness programme including assessment of risks, for example atlanto-axial instability in people with Down’s syndrome;
- Health promotion and health education in the home setting or residential placement, day centre and respite care.
A consistent approach from staff teams in different settings is vital to provide structure and familiarity for patients, particularly for those with autism and learning disabilities.
A key aspect is effective use of communication for each person’s level of ability, including using British sign language, Makaton (a language programme using signs and symbols: www.makaton.org) or the picture exchange communication system (PECS: www.pecs.org.uk). Such an approach can help to engage clients meaningfully, reducing identified health risks and helping them to make healthy lifestyle choices.
Mental Capacity Act
The rights of people with learning disabilities to make choices, including choosing a particular lifestyle, need to be respected and are protected by law (Department of Health, 2007). However, carers can face dilemmas when addressing obesity and cardiovascular risks, in terms of balancing their responsibility of care while also protecting individuals’ rights, particularly where clients make potentially harmful lifestyle choices, such as persistent overeating.
In these circumstances, mental capacity needs to be assessed with regard to each of the identified health risks and specific decisions people make regarding one or more lifestyle choices contributing to the risk. If the person lacks capacity to make a decision relating to a particular lifestyle choice/s and hence the risk to their health, a best interests decision needs to be taken by stakeholders including primary care professionals under the Mental Capacity Act 2005.
Access to care at point of need
In some people with learning disabilities, both non cooperation and non concordance may be a barrier. Some express a fear or dislike of attending hospitals and GP surgeries and of complying with procedures or use of equipment, such as an ECG, or have a needle phobia preventing blood tests for screening. This may result in failure to detect health problems early and contribute to health inequalities in this group.
Community learning disability nurses can provide a graded desensitisation programme, although this may take several weeks or months to be successful. The same team could also carry out basic health checks after appropriate training, including pulse, blood pressure, BMI and abdominal girth measurements and regular monitoring in those at risk, liaising closely with both primary and acute care. Community learning disability nurses could receive training in phlebotomy and carry out both ECG recordings and blood tests in patients’ own homes.
Care pathways and interventions
Care pathways and intervention programmes have been developed specifically for children with obesity, and some of these could be adapted for children and adults with learning disabilities. Pheasant and Enock (2008) developed a care pathway for children with obesity with six stages:
- Identification of obesity;
- Assessment and classification;
- First line advice including lifestyle assessment by health visitors, general nurses, nursery nurses and/or practice nurses and use of behavioural change techniques;
- Follow up monitoring;
- Second line advice coordinated by a health visitor/nurse;
- Third line advice including psychology and dietetic assessment;
- Fourth line advice including assessment by a paediatrician.
Specific intervention programmes for children with obesity include MEND (Mind, Exercise, Nutrition…Do it!), Traffic Light Programme, Watch IT, Carnegie Weight Management and Empower programmes (see Table 1 for details). These could be adapted for children and adults with learning disabilities and obesity. The DH (2009) has published a list of courses focusing on treatment for adults with obesity, some of which could also be adapted.
Annual health checks in primary care and more regular monitoring by practice nurses, liaising with community learning disability nurses, are vital to identify potential problems early. Person centred planning needs to be put in place, with partnership working between primary and acute care, learning disability services, relevant specialists and social services, to reduce the risk of developing obesity and cardiovascular morbidity.
Methodologically robust studies are needed to investigate both the aetiology and management of obesity in this group to ensure prevention and early intervention.
We would like to thank Jenny Follows for secretarial support.
Adolfsson P et al (2008) Observed dietary intake in adults with intellectual disability living in the community. Food & Nutrition Research; 52.
Aschcroft R et al (2001) Are antipsychotic drugs the right treatment for challenging behaviour in learning disability? The place of a randomised trial. Journal of Medical Ethics; 27: 5, 338-43.
Bhaumik S et al (2008) Body mass index in adults with intellectual disability: distribution, associations and service implications: a population-based prevalence study. Journal of Intellectual Disability Research; 52: 287-98.
Chapman MJ et al (2008) Following up fighting fit: the long-term impact of health practitioner input on obesity and BMI amongst adults with intellectual disabilities. Journal of Intellectual Disabilities; 12: 4, 309-23.
Chapman MJ et al (2005) Fighting fit? An evaluation of health practitioner input to improve healthy living and reduce obesity for adults with learning disabilities. Journal of Intellectual Disabilities; 9: 2, 131-44.
Department of Health (2009) Healthy Weight, Healthy Lives: Directory of Obesity Training Providers. London: DH.
Department of Health (2007) Valuing People Now: From Progress to Transformation. London: DH.
Emerson E (2005) Underweight, obesity and exercise among adults with intellectual disabilities in supported accommodation in Northern England. Journal of Intellectual Disability Research; 49: 2, 134-143.
Hamilton S et al (2007) A review of weight loss interventions for adults with intellectual disabilities. Obesity Reviews; 8: 4, 339-45.
Henderson A et al (2007) Adults with Down’s syndrome: the prevalence of complications and health care in the community. British Journal ofGeneral Practice; 57: 534, 50-5.
Hill DA et al (2003) Mortality and cancer incidence among individuals with Down syndrome. Archives of Internal Medicine; 163: 6, 705-11.
Mercer S (2009) How useful are clinical guidelines for the management of obesity in general practice? British Journal of General Practice; 59: 863-868.
Messent PR et al (1999) Primary and secondary barriers to physically active healthy lifestyles for adults with learning disabilities. Disability andRehabilitation; 21: 9, 409-19.
Messent PR et al (1998) Daily physical activity in adults with mild and moderate learning disabilities: is there enough? Disability andRehabilitation; 20: 11, 424-7.
Michael J (2008) Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. London: DH.
National Institute for Health and Clinical Excellence (2006) Obesity: The Prevention, Identification, Assessment and Management ofOverweight and Obesity in Adults and Children. London: NICE.
Newcomer JW (2005) Second-generation (atypical) antipsychotics and metabolic effects: a comprehensive literature review. CNSDrugs; 19 (Suppl 1): 1-93.
Pheasant H, Enock K (2008) Developing Children’s Obesity Care Pathway(s) – A ‘How To’ Guide. London: London Child Obesity Care Pathway Working Group.
Wallace RA, Schluter P (2008) Audit of cardiovascular disease risk factors among supported adults with intellectual disability attending an ageing clinic. Journal of Intellectual and Developmental Disability; 33: 1, 48-58.
Wallén EF et al (2009) High prevalence of cardio-metabolic risk factors among adolescents with intellectual disability. Acta Paediatrica; 98: 5, 853-9.
Whitaker S (2004) Hidden learning disability. British Journal of Learning Disabilities; 32: 3, 139-143.
Yamaki K (2005) Body weight status among adults with intellectual disability in the community. Mental Retardation; 43: 1, 1-10.